THE SOUTH AFRICAN ASSOCIATION FOR THE
SCIENTIFIC STUDY OF MENTAL HANDICAP
(NPO Registration No: 003-748, PBO No 930001925)
c/o Professor C Adnams
Tel: 021 404 2166
UCT Department of Psychiatry & Mental Health
J Block, Groote Schuur Hospital
ANZIO ROAD, OBSERVATORY 7925 email: firstname.lastname@example.org
SAASSMH conference reflections:
Luke Lamprecht (Convenor)
It was a great honour to convene this year's conference. The quality and willingness of the speakers was extraordinary. During my conference preparation, the presentations I attended and looking back at the day I was struck by the fact that there needed to be a community based presence within his association. The premise for my talk was based on the International Classification of Functioning and the fact that regardless of a limitation, we need to strive for maximum participation within the legal parameters and available resources. It seems that, due to a lack of resources, not all cognitively impaired people have access to the range of services that exist within a big city like Johannesburg. So the questions I started posing included:
What organic responses have communities developed to deal with the challenges caused by some form of disability? While we are looking at inclusion in mainstream schools, are those in more rural or under-resourced areas advocating to have their children placed in “special schools”? Have children from these areas not just naturally been integrated into communities due to them not being diagnosed and as a result not labelled? How have they coped within these communities, and where there are limitations how are these managed?
There were many more questions raised for me and some of my colleagues which lead to us wanting to find some answers. The outcome of this questioning has resulted in our theme for next year's conference and a renewed energy to look at these issues critically.
Suggested theme: Community responses to cognitive impairment: Lessons from the ground.
We do not want to divide the field of cognitive impairment based on class lines and allow the availability of resources to determine the level of participation in society. We have a lot to learn from those who have managed the cognitively impaired without the benefit of specialist medical and psycho-social support and we have lessons to offer them. So, going into next year we are wanting to source community based organisations to start preparing for the next conference. We are in the process of compiling a database of as many organisations as we can find so that the participation can be as broad as possible. We would love to hear from you with regard to resources as well as ideas for topics fort the conference or any other input you may have to inform our way forward. My apologies for the delay in the distribution of this last newsletter of the year, it was so that we could try get it out as broadly as possible. A special thank you to The Sponge for access to their quite formidable database, Bigshoes for compiling a databse as well as those who have sent your resources through to us.
Have a fantastic festive season, rest and return invigorated in our year ahead towards a participative conference.
WHAT WENT ON AT OUR WORKSHOP?
Our annual SAASSMH workshop has been and gone. This year it was held in the Auditorium at the Children’s Memorial Institute, Braamfontein, on Tuesday 7 September 2010. Altogether about 70 people attended, including teachers, social workers, psychologists, paediatricians, psychiatrists, medical geneticists, genetic counsellors, nurses and staff of special schools and other services. Also, several services, such as the Toy Library, put up exhibits about their work
The theme was Syndromes causing intellectual disability and their associated behaviours. There were three sessions on children, adolescents and adults. The excellent speakers gave the audience much to think about and challenges concerning their practice in the field. Their contributions are briefly summarized below.
The first speaker was Professor Amanda Krause, Head of Clinical Genetics, University of the Witwatersrand (Wits) and National Health Laboratory Service (NHLS). Her topic was the Genetics of Down, Fragile X, Fetal Alcohol, Prader-Willi and Williams syndromes. She said these five conditions, associated with intellectual disability, each had a different genetic cause.
* Down syndrome occurred in about 1 in 700 people and was caused by the presence of a whole extra chromosome 21. Recurrence risks were low, except in the case of translocations (which occur in only 4% of people with Down syndrome), where, if a parent carried a balanced translocation the risk for another affected child was high.
* Williams syndrome was a sporadic condition found in about 1 in 8000 people. Affected children had developmental delay, but spared language skills, stelate irides, cardiac, hearing and connective tissue defects. The syndrome was caused by a microdeletion of 17 genes on chromosome 7q.11.3. The recurrence risk was low, but, rarely, a parent is affected and then the risk increases to 50%.
* Fragile X syndrome occurred in about 1 in 6000 males with an IQ less than 70 and one gene on the X chromosome was responsible. However, it was inherited as an atypical X linked condition and some females were affected. It was a triplet repeat disorder and recurrence was high in families. All affected individuals had an IQ less than 70, 30-80% had developmental delays, and a Parkinson-like tremor/ataxia condition could occur in males (mostly in older age).
* Prader-Willi syndrome was less common and occurred in 1 in 25 000 infants. The condition followed a non-Mendelian inheritance pattern. The affected infants were usually small floppy babies with small genitalia, pale skin, low weight and feeding problems. Later however, they overate and became obese. They had a double contribution of genetic material on chromosome 15 from their mother and the father’s gene was not active. There was a very small recurrence risk in most families, but a few had a higher risk.
* Fetal alcohol syndrome occurred in only 1 in 1000 infants worldwide, but in the Western Cape the rate was 40/1000 and the Northern Cape it was 67/1000. The affected children showed growth deficiency, distinct facial features, small heads, heart defects and intellectual disability. The cause was increased maternal alcohol consumption during pregnancy and possibly paternal consumption prior to conception, as well as a genetic susceptibility.
Professor Lorna Jacklin, Professor of Paediatrics, Wits University, followed. Her topic was the behavioural phenotypes (patterns) associated with the five syndromes covered by the first speaker. She said it is important to recognize the behavioural phenotypes since the behavioural problems may precede the health problems and diagnosis.
In the case of Down syndrome, children were often placid and compliant, but 17% have psychiatric disorders such as attention deficit and hyperactivity disorders (ADHD). Most have an expressive language delay and understand spoken language better than non-verbals. Some develop depression and some Alzheimer’s by the age of 50 years. Hypothyroidism can cause problems and this condition must be excluded in all affected people.
Williams syndrome was a condition in which the infants have feeding difficulties, irritability, constipation, failure to thrive, and later, no social inhibitions, anxieties and fears, poor attention spans, ADHD, hyperacusis (they are too sensitive to sound), intellectual disability and a low non-verbal IQ. However, many have a ‘cocktail personality’ and are friendly and chatty.
In children with Fragile X syndrome 10% are non-verbal, some are autistic, having social anxiety, making friends but having no physical contact, some are hyperactive and cannot concentrate. Even individuals with a permutation can have serious behaviour problems
Infants with Prader-Willi syndrome often do not kick in utero, have poor movements, are breach deliveries, and/or require Caesarian sections. After delivery they struggle to breathe and feed. They become moody, aggressive, emotionally unstable, self-mutilating, with repetitive speech (eg. Why), echolalia, and obsessive compulsive behaviour (particularly regarding eating). About 40% have border-line to low average intelligence, and poor concentration. Their eating habits could sometimes be modified, if the parents understand the problem and are trained to control it from very early in the child’s development, before the obesity develops.
Angelman syndrome is a condition which has the opposite genetic cause to Prader-Willi, and the mother’s genes on chromosome 15 are inactivated. The affected children are very impaired, not autistic, have very little speech, sleep problems, developmental delays, motor problems. They are active as children and love water, but are placid as adults. They are also happy and laugh a lot and the condition is sometimes called the ‘happy puppet syndrome’.
People with the Fetal alcohol syndrome have many psychiatric disorders. About 70-75% do not have a low IQ and intellectual disability. However, intellectual ability might be better if they were understood, well treated and stimulated. They often have ADHD, poor mathematical ability, reading disorders, abnormal brain structure and neurophysiology, and require environmental mediators.
Understanding the behaviours associated with specific syndrome is essential if appropriate interventions and education are to be planned. Early intervention can be important (eg. in children with Prader Willi, who do not have to become obese), for working out strengths, weaknesses and needs, and treating accordingly.
The next speaker was Professor Chris Szabo, Professor of Psychiatry at Wits University, whose topic was Disordered Eating. His first question was “What is normal eating?” There are four factors in eating: type, range, quantity and motivation. There has to be adequate food, which is a pleasure to eat, eating has to be in response to a drive (with no aberrant emotions and responses), and food has to be consumed in a way that is not offensive. In the case of eating disorders, the appetite is in tact but fear and inappropriate concern drives the behaviour (eg. anorexia, bulimia, binge eating). Sometimes there are underlying organic problems (eg Prader-Willi). Nutrition status is an important issue in intellectual disability, but diagnosis of the eating disorder can be difficult where there is limited communication. In one study 27% of people with IDs were shown to be binge eaters,mostly by eating too much (usually sweet food) and too fast, sometimes by continuous food-seeking and stealing; and 66% had dysfunctional eating and were non-co-operative during meal-times. Intervention had to be preceded by observation and assessment, tailored to the individual type and texture of foods, and include developing social skills (the relation of the feeder to the individual was also important), as well as occupational therapy and medical treatment, where necessary. The approach had to be multidisciplinary and focused on behavioural responses.
After the tea break Tom Burkhalter, a psychologist and father of a child with an intellectual disability spoke on the Status of Fathers. He felt that fathers were an untapped resource and were not peripheral. They were often sleep deprived, stressed and vulnerable to emotional triggers. They had to manage their stress within their shrinking network. They had different experiences from the mother and different challenges to their behaviour. Active parenting is seen as the domain of the mother (only 5% of published papers deal with fathers). Fathers may be absent or very involved, they may feel alienated, or incidental, and may not ask for help. However, where a father is involved the child does better, and if they share the load the mother does better. They can take up some childcare tasks and can focus on the parent’s needs. Parents can take each others roles (even if they differ, another mind to consider the issues is useful); there is value in diversity, complementing strengths and contributions. In the case of behaviour management the child may obey the father better, and fathers may set boundaries and be fairer in considering the other children. Mothers may have more guilt, separation anxiety and self-regulation problems. However, fathers may internalize, feel inadequate and incompetent, related to the child’s difficult behaviours, and may then withdraw and become prone to stress related illnesses. The question is how to facilitate the fathers’ participation, since they are often both breadwinners and active parents. Fathers should always be present at the initial medical consultation, they can then share their intense feelings, if given the opportunity to talk. Thereafter, they should be involved as often as possible and recognized as a useful resource.
Professor Cora Smith, a Professor of Psychology at Wits, spoke on Managing Difficult Behaviour in Adolescents. She stated that all adolescents want independence, and they are “all for me, I and not you”, but they are also lonely. There is physical as well as cognitive growth and a changing body image, and the peer group is all important. Children with IDs are more self involved, and unrealistic, and the parents are often overprotective. Parents have expectations of all adolescents and those who cannot perform often show denial, anger, fear, guilt, and are stressed beyond their ability to cope. Parents need to come to terms with the situation and their own waxing and waning expectations. Sometimes there is burn-out which results in neglect. The adolescent may then get inconsistent and punitive management, and may act out sexually. They may need contraception, supervision, and boosts to their self-esteem (related to achievement). Individual psychotherapy does not work, the whole family needs to be involved and the function of the difficult behaviour investigated. Hidings increase aggression and have immediate consequences, and siblings might have to be protected. The key to managing difficult behaviour (once parental and family conflict is understood) is establishing consistency (even in the worst fights), routine, supervision, agreement between parents and adolescent, and micromanaging.
The following speaker was Viv Nightingale, a parent and a board member of several special schools, her topic was Individualised Development Programmes. She described the residential settings where she was involved and the fact that such settings are no longer seen as places of care and safety, but places where there are opportunities for development. Every resident should have their own individualized development plan (IDP). All aspects of life should be addressed, including quality of life, social, recreational and emotional well being, physical, spiritual and cognitive needs, as well as meals, and caring about others, animals and nature. Residents are interviewed to establish their strengths, weaknesses and needs and specific plans are developed.
The last speaker, before lunch, was Jill Stacey, National Director of Autism, SA, who spoke on A parent’s experience of behavioural challenges and management. She said that adolescents with autism have a quartet of impairment: sensory, physical, behavioural and emotional, and intellectual. As a mother she accepts that she hates birthdays, she then has to admit that the gap between her child and others is getting bigger; she tries to keep this gap as small as possible. Once a child has learned bad behaviour it is difficult to change it, and techniques of distraction as well as positive reinforcement are required. She has to have different rules for different siblings, boundaries are necessary, as well as protection and social acceptance. Routines are essential, with discussion about what is happening today, from the beginning to the end. Compliance depends on the child seeing the point of the exercise. Stimming objects (eg. a security blanket or familiar soft toy) are often necessary and they should always be available and in sight, to prevent anxiety attacks. Self harm usually results from frustration, lack of routine or communication. Exercise such as swimming is worthwhile. Transfer of skills (such as dealing with toileting, or quiet time) has to be achieved for social acceptability. Adaptation and conforming to social norms improves the quality of life for the adolescent and the family.
After lunch, the theme of the third session was adults. The first speaker was Candice Cronje, social worker at Logwood, and she was speaking on behalf of the Director of Logwood, who could not be present, on Managing Behaviour in Adults. Members of Logwood staff are developing a Code of Conduct for the residents. This code is concerned with the best way of managing difficult behaviour; the triggers for difficult or changing behaviour and how to assess and manage these; ensuring consistency; education for staff and support staff; the nature of activities, whether they are sufficiently stimulating and challenging to prevent bad behaviour; and guidelines for physical intervention, such as physical restraints (removing the highly agitated person) or chemical restraints (to protect others). From the first admission of a resident it is essential to: obtain a good history, especially concerning behaviour problems; set boundaries; get to know the individual well; ensure consistency; support both staff and parents; network; and refer, when necessary.
The following speaker was Johanna Kistner, a psychologist, whose topic was Managing sexuality and acting out behaviours; ethical considerations in a community setting. She raised two questions: who decides if a disabled person should be able to reproduce and who decides on the value of life? We try to reduce the suffering of disabled people in the community, but there is poverty, neglect, abuse of power, no access to resources, economic and social injustice. She proceeded to give examples from the individuals with whom she has worked. Conversations about these problems need to be held in the here and now and younger professional people need to take up the baton and tackle the issues.
Our last speaker was Luke Lamprecht, psychologist, who facilitated a discussion of two of his cases which highlighted many of the difficult issues mentioned by Johanna. The first was an intellectually disabled girl who was HIV+, had an incestuous relationship with her father, had children by him, took the place of her mother when she died, but knew no other life and refused to be removed from her situation. The second was about a 17 year old boy with Down syndrome who was abused, resulting in outing sexual expression; he could not say no. He needed maximum participation in society to control this behaviour. It was noted that the behaviour of people with IDs is a way of talking to others and may take the place of normal communication.
The audience learned a great deal from these stimulating and challenging speakers, and they hoped that another workshop would be held in 2011. However, the present committee are all retiring and NEW VOLUNTEERS are required if the workshops are to continue. Anyone willing to act on a new committee should contact Professor J Kromberg at Jennifer.email@example.com or phone 011 489 9212.
INTERNATIONAL EVENTS DIARY
INFORMATION AVAILABLE AT
3rd IASSID‐Europe Conference
20-22 Oct. 2010
NADD 27th annual conference
3-5 Nov. 2010
27th Pacific Rim International Conference on Disabilities
International Down syndrome conference
For details about specific events please contact the given web-site or email number, or Jennifer Kromberg at firstname.lastname@example.org or Carina Vlachos at email@example.com.
ODDS AND ENDS
14th IASSID CONGRESS, 2012.
The next four yearly international congress of IASSID (the last was held in Cape Town in 2008) will be held in Halifax, Canada, in the last half of 2012 (only two years from now!). These congresses bring people from around the world to one place to talk about intellectual disability. Many different aspects of the topic are covered, workshops are held and the latest theories and practices are aired and discussed. Make a plan to attend, it is very worthwhile. For further details check the IASSID web-site.
15th WORLD CONGRESS of INCLUSION INTERNATIONAL June 2010.
The SAASSMH office has a copy of the fascinating report written by Ms Marie Schoeman, of the Department of Education, Pretoria, who was present at the congress. It was held in Berlin and 2500 delegates including 800 with intellectual disabilities participated. The theme was Inclusion: Global Rights into Action. The report is well worth reading and there are recommendations for South Africa, arising from insights gained at the congress. Contact Professor Kromberg (see email address below), with your email address, if you would like an electronic copy of the report emailed to you.
We would like to send all our newsletters out electronically so would members who have not yet sent us their email addresses please send them soon to: firstname.lastname@example.org.
Membership fees (R50) were due in April 2010. Thank you to those many members who paid around the time of the workshop. If you pay by direct deposit into the SAASSMH bank account (please do not use cash, as a cash deposit may cost us R30.00), please remember to write your name, as reference, on the deposit slip and send/ fax it to SAASSMH.
CONTRIBUTIONS TO THE NEWSLETTER
We encourage readers to send in contributions for the Newsletter to the Editors at email@example.com or firstname.lastname@example.org .
The views expressed in this newsletter do not necessarily reflect those of the SAASSMH
****This is our last newsletter of the year. So we wish all our members and adherents
all the best over the Christmas season and for the New Year ****