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The purpose of this paper is to establish the value of clinical genetic diagnostics in the lives of people with an intellectual disability (ID), their families, and their primary and professional caregivers. It has been shown that psychologists are more likely to make use of the opportunities offered by clinical genetic diagnostics if they have seen the psychological benefits in their own practice. Moreover, this paper aims to promote the practice of informing people with ID, their families, and other caregivers regarding the current technological advances in genetic diagnostics, thereby allowing these patients to decide for themselves whether to utilise these opportunities.

The authors report four case studies in which the psychosocial value to each patient is pivotal.

In these four cases, it is clear the medical model can augment the social model by providing an interpretation of its meaningfulness in the lives of the people concerned.

Case studies alone can have limited scientific significance. This approach examining the significance of clinical genetic diagnosis should be studied further in larger groups.

It is hoped that psychologists and other professional caregivers will become enthused about the value of clinical genetic diagnostics and will choose to discuss the option of referral for clinical genetic diagnostics with their patients more often.

People with an ID who are seeking mental health care, and their caregivers, should be given the opportunity to take part in the decision regarding whether to use clinical genetic diagnostics, which may even have a destigmatising effect.

Quality of life may improve for people with an ID seeking mental healthcare and for their caregivers as well by opening up discussion regarding the opportunities presented by clinical genetic diagnostics. The fact that people are able to make their own choices based on their own considerations can have a destigmatising effect.

The behavioral phenotype of fragile X syndrome (FXS) and intellectual disability (ID) proposed by Hagerman et al. (2009) was primarily based on data from male children and teens. The purpose of this study was to promote a better understanding of how this condition manifests in adults.

A total of 18 men of FXS were paired with men with Down syndrome on the basis of age and level of ID. A screening checklist was created on the basis of existing scales and the Hagerman et al. (2009) behavioral phenotype and completed by care providers.

Five of the 12 features of the phenotype were significantly more present among men with FXS than in men with Down syndrome.

This study provides partial confirmation for Hagerman et al.’s (2009) behavioral phenotype of FXS among men with moderate ID and identified some traits that warrant further investigation.

Research into the communication skills of individuals with Cornelia de Lange syndrome (CdLS) is extremely limited. This paper aims to evaluate the nature of these skills and impairments in CdLS using a detailed informant assessment of pre-verbal communication skills.

The study used the Pre-verbal Communication Schedule to evaluate communication skills in individuals with CdLS (n=14), aged five to14 years. The group was compared with a contrast group of individuals with Cri du Chat syndrome (CdCS; n=14) who were matched for age and intellectual ability.

A significant difference was identified in understanding non-vocal communication (p<0.005), with the CdLS group showing a greater deficit. These findings indicate the presence of a syndrome-specific deficit in understanding non-verbal communication in individuals with CdLS and suggest that there may be a dissociation between the processing of verbal and non-verbal communication.

The findings indicate that, in many ways, these two syndrome groups are not dissimilar in terms of their communication skills. However, individuals with CdLS show a syndrome-specific deficit in understanding non-vocal communication relative to the CdCS group.

22q11.2 deletion syndrome (22q11.2DS) is a rare genetic syndrome involving high risk of psychiatric disorders with average intellectual functioning in the lower borderline range. Due to the cognitive and social problems many adolescents with 22q11.2DS experience, adaptions may be needed to teach these adolescents cognitive behavioral therapy (CBT) skills. The purpose of this paper is to assess psychosocial functioning in adolescents with 22q11.2DS and to adapt CBT with this group.

Totally twelve adolescents (M age=14.5 years, SD=1.4, range 12-17 years; 25 percent boys) with 22q11.2DS were recruited from a competence center for rare disorders. Their parents completed the Child Behavior Checklist and the Kiddie SADS screening interview. The adolescents participated in 7×45-minute CBT group sessions, comprising emotional awareness, cognitive restructuring tasks, and problem-solving skills.

Adolescents had poor parent-reported social and school functioning at onset. The most frequent disorders indicated by screening interviews were attention deficit hyperactivity disorder (92 percent), anxiety (58 percent), depression (50 percent), autism spectrum disorders (50 percent), and potential post traumatic stress disorder (50 percent).

The main adaptions made to CBT groups were shorter sessions, frequent breaks, and repetition of main points, limited use of written materials and items that could distract participants (e.g. balloons, papers), extensive and explicit use of turn taking, and two adult group facilitators per group.

Offers practical advice on teaching CBT skills to adolescents with 22q11.2DS, which may also be applicable to other adolescents with lower borderline intellectual functioning or intellectual disabilities.

This article examines the dialectics of wrongful life and wrongful birth claims in Israel from 1986 until 2012. In May 2012 Israeli Supreme Court declared that while wrongful birth claims were still permitted, wrongful life claims were no longer accepted in a court of law. The article examines the conditions that allowed for and supported the expansion of wrongful life/birth claims until 2012. The article identifies two parallel dynamics of expansion: a broadening of the scope of negligent conduct and a view of milder forms of disabilities as damage that merits compensation. The article further suggests four explanations for such doctrinal evolution, two of which emanate from doctrinal ambiguities and the other two are rooted in social factors that have shaped the meaning of disability as a tragedy and state of inferiority. While recent developments seem promising, the article concludes with a word of caution. Such changes may reproduce past injustices mainly because the compensation mechanism has remained an individual-torts based one, which may run counter to the broader struggle for social change for disabled people.

People with fragile X syndrome (FXS), a monogenetic disorder with frequent autism spectrum disorder symptoms, are confronted with many health-related needs, especially concerning behavioural and mental problems. The number of publications about health inequalities or the usage of health services in persons with FXS is scarce in general. There is no information about the situation in Germany. The paper aims to discuss this issue.

Assessment of health status, access to, and satisfaction with health care in people with fragile X by a questionnaire completed by their parents.

A total of 74 questionnaires were included in the assessment. While children and adolescents with FXS often (40 per cent) utilised specialised services for the coordination of health-related services, adults most often made use of family doctors. Most parents described the health status of their relatives as good to excellent (89 per cent). However, the satisfaction with health care-related demands by family doctors, medical specialists, and psychotherapists was rated in the average to above average range.

This paper is of special value as it gives insight into the perspective of parents concerning access to health care of FXS in Germany.

This paper gives a first insight concerning access of people with FXS to the German health care system.

The aim of this paper is to provide an overview of the dominant approaches used to explain causes of challenging behaviour.

This paper is the second in a two‐part series. It presents the causes of challenging behaviour according to the three theoretical approaches that have dominated the literature: applied behaviour analysis; biological factors; and psychiatric disorders.

It is apparent that the causes of challenging behaviour are likely to be complex and involve multiple factors. The approaches that have dominated the literature focus on single causes and do not explore possible interactions between various causes. Given the shortcomings of existing approaches, a fourth approach, the biopsychosocial model, is proposed as an alternative model to explain the causes of challenging behaviour.

This paper is the most recent of only a few providing an overview of the various approaches that seek to explain the causes of challenging behaviour.

Another Christmas month is upon us, following it seems quickly on others that have been. Such is the relativity of Time, it is not yesteryear, but could be yester‐month or even yester‐week. The seasons pass like youth, all too soon. Our minds return to other Christmas months of yore — “Memories are like Christmas roses!”, the old saying goes. The children, singing much‐loved hymns and carols, happy family settings, a birth, christening, so much to look forward to in the new year. There are not always such happy memories, but memories just the same — Christmas in war‐time, Earth's joys growing dimmer each year, change and decay, life drawing to a close for many a soul; old folk tend to see Christmas as a time of passing, of leaving the world behind.

The purpose of this paper is to present a rationale for increasing initiatives for early intervention of emotional and behaviour difficulties.

The authors draw on existing literature regarding rates of emotional and behavioural difficulties together with risk factors and processes related to the development of such difficulties.

Rates of emotional and behavioural difficulties amongst children with learning and developmental difficulties are high. A combination of factors relating to the child, the family system, and wider social contexts is likely to account for this.

Increased attempts to provide early intervention to children with learning and developmental disabilities together with their families are warranted. Recommendations are made regarding how the development of such supports might best be taken forward.

Whilst drawing on pre-existing literature, the value of this paper is the way in which this has been drawn together to provide an overview of risk and development of behavioural and other difficulties amongst children with learning/developmental disabilities.