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autism an educational handbook

Thank you to Chris Underhill, the staff of BasicNeedsGhana, the teachers at Yumba Special Needs School, the Watson Institute at Brown University and the A-Majeed family for making this handbook possible.

A Global Problem The World Health Organization (WHO) predicts mental illness to be the leading global cause of years lost to disability by 2020 (surpassing AIDS and heart diseases).1 Nonetheless, Ghana still allocates just over 2% of their total health budget to mental health, compared to the 15% recommendation from WHO.2 As for the prevalence of mental disabilities in children, WHO estimates that 20% of children worldwide are affected by a disabling mental illness.3 Children are much more vulnerable to the effects of mental illness, as they often already struggle with communication and are incredibly vulnerable to discrimination. Additionally, if symptoms appear (for example, delayed speech), these symptoms are often dismissed as developmental “phases�. Despite all these facts, child mental disorders are often neglected. Indeed, prevalence rates have never been validly or empirically tested in Ghana. Particularly in rural Ghana, the lack of information about child mental illness leads many locals to believe that mental disorders are untreatable or even contagious. Many seek out traditional healers, whose spiritually-based treatments alone are insufficient. Without widespread knowledge of child mental disorders, basic human rights are often violated, and sustainable recovery in children is often inhibited.

Autism Autism is one of the most active areas of current research in developmental disorders.4 Nevertheless, there have been very few, if any, efforts to implement a community-based model to provide knowledge and therapy for children with autism, as well as their families. Without knowledge, diagnosis and treatment, autism can be a burden on the family. The disorder typically affects the most fundamental aspects of quality of life, such as understanding what others feel and think, communicating your basic needs or socializing with other people and making sense of emotions. Autism is a lifelong disorder but, to an extent, is treatable with the correct information and interventions. Sustainable improvement from symptoms can be achieved by teaching community mental health workers and families, and by emphasising early intervention and long-term follow-through strategies. By doing so, those with autism can avoid the most serious consequences of the disorder. While most of the information in this handbook is also applicable to adults with autism, the book is primarily targeted towards children and emphasises early intervention. It provides information for family members, teachers, wider community members and mental health workers on symptoms, home-based behavioural treatments, and ways to cope when one knows or has a child with autism.

This is the story of two brothers, as told by their parents, who are among the five known autistic children attending a Special Needs school in Tamale, Ghana. Their story will be a visual case study for the information presented.

Quick Facts It is estimated that 1 in 160 are affected by autism spectrum disorder.5 Chances are, you know a child or adult with autism. Autism is not contagious; it is not a result of witchcraft and it does not develop through bad parenting. Both genetics and the environment may play a role. There is no single known cause and there is no single known cure. But there is hope to improve symptoms.

“Sometimes you meet this kind of child, and you think it’s their parents’ fault- lack of care, or otherwise. But sometimes, you can have the care,you can have everything ... it is not your fault. For me, I will do my duty as a parent. We are trying everything with all our vigour.”

By identifying and treating autism early on, a young child can improve symptoms of autism greatly. With love and support from the family, the community and you, those with autism can be taught how to socially interact, use gestures, recognize facial expressions, and be better able to communicate their feelings. They can lead normal lives; they can contribute productively and even financially to their families and communities.

“My children, they look after each other. They never fight. Their brother helps them bathe and get ready for school. Their sister draws with Baba.�

Symptoms Autism can be characterised by difficulties in language, social interaction and behaviour. However, symptoms and severity of autism vary from person to person, and can change over time. Language: + Does not speak or has delayed speech + Makes no attempt to communicate with gestures or miming + Speaks with an abnormal tone or rhythm + Repeats words or phrases + Cannot start a conversation or keep one going + Does not appear to understand simple questions + Loses previous language abilities Social interaction: + Has poor eye contact + Appears not to hear you at times; doesn’t respond when name is called + Has difficulty forming friendships and prefers playing alone + Resists cuddling and holding + Has difficulty sharing emotional responses + Does not ask for help or request things; does not typically share objects

“Baba used to be very fluent in our dialect. Baba can speak, but he will speak your words back to you. Adnan, he would not speak. When Adnan is happy, sometimes he will speak as if he is singing. ”

Behaviour: + Engages in restricted or repetitive activities + Has abnormally intense interests + Makes repetitive motor movements + May be fascinated by details of objects + Has a lack of sensitivity or oversensitivity to touch, sound, light and/or smell + Has interest in sensory aspects of the environment + Becomes disturbed at the slightest change in routines or rituals

“Adnan likes to ride his bicycle. He will ride around and around for hours. Baba loves elephants; he has many elephant toys, and he likes to draw elephants. Baba used to be very hyperactive, always moving around... Sometimes, when the bus is late, they become very frustrated.�

Early Signs Other medical conditions may accompany autism, such as epilepsy or hyperactivity. This can often be treated with medication. The linguistic, social and behavioural symptoms can be better improved if autism is identified early and appropriate behavioural treatment implemented. While hearing or delayed speech problems may be responsible, there are some early signs of autism: + Does not respond with a smile or happy expression by 6 months + Does not mimic sounds or facial expressions by 9 months + Does not make speech-like sounds by 12 months + Does not gesture, point or wave by 12 months + Does not say a single words by 16 months + Does not say two-word phrases by 24 months + Loses previously acquired language or social skills at any age + Exhibits unusual motor movements (e.g. hand motions)

“We thought it was delayed speech, until it became too much. Some people thought he was deaf or dumb. So, we went to the hospital and did some lab tests. They told us nothing was wrong and sent us away. So we drove 13-14 hours to Accra; there, the doctor told us it was autism.�

Coping With Diagnosis As a family member, and especially as a parent, it is normal to experience a range of emotions when you have identified autism. You may be shocked, sad, angry or in denial. Remember you are not alone, and that there is hope. While you may not have access to a psychologist or psychiatrist, there are many things you can do to improve the symptoms of autism, and the life of your child. Soon, you will likely experience feelings of hope as you watch your child progress. The best thing you can do for your child is to accept the diagnosis and begin loving them for who they are, not what they should be. Remember to: + Interact, communicate and share as much as possible with your child, even if he/she does not seem interested; find activities to do together + Reward and praise them when they are responsive + Appreciate the small successes your child may achieve + Put judgment aside and try not to compare children + Look for your child’s strengths (for example, unlike some other children, he/she doesn’t lie, cheat, or judge others) + Focus on what they can do, rather than what they cannot do + Love them unconditionally

“They are healthy, and they are good kids; they are both very well-behaved and they always listen.”

Advocacy You can make a big difference in reducing stigma and improving the lives of children with autism within your community by spreading what you now understand about autism. Advocate for them. + Tell people; tell neighbourhood children who may interact with the child. + Tell as many as possible that autism is not contagious or spiritual, and that those with autism should be treated with respect. + Educate teachers, family and friends within your community. + Start advocacy groups, or join others. + Be as informed as possible; ask community mental health workers for help and speak to local psychiatrists, psychologists, psychiatric nurses or physicians if possible. + Don’t push your feelings away- talk about them. + If you know a child with symptoms of autism, show one of their family members this book.

“At first, they didn’t understand his condition. They thought he was a dumb boy, a different child. So they would harrass him, and pour drinks on his head... So we had to explain. Don’t try to stigmatize somebody. If you explain, they will understand. Some may try to help you.”

Finding Support For parents: + Ask for help from family members, friends and neighbours. + If possible, talk to other families who are also dealing with autism within their family. + Develop your own support group. + Talk about your feelings. + Be open and honest about the disorder. For the community: + Even if you do not have a family member with autism, remember that those families are struggling similarly in raising their children. + Reach out, and support them. + Talk to them. + Spend time with their children. + Be informed about autism. + Know simple behavioural strategies and how to act around the children.

“It’s not easy-- everyone wants to understand their child. And financially, it’s not easy too. I am trying to manage the store, and I also have to do cooking, I have to do cleaning. ..If you don’t have your own children who are free to help, you ask other children in the neighbourhood. We seek help from relatives once in a while.”

Communicating Family and community members should know when the child is seeking help, is sick or is in danger. Therefore, it is important for the health, well-being and growth of the child to find out how he or she communicates and to also teach the child how to communicate. + If you want to communicate with the child, go over to him/her, get his/her attention and speak in plain, literal words. + Use pictures and visual supports to communicate (see Self-Help Strategies) + Every child communicates. Learn how the child communicates, and be alert for body language, withdrawal, agitation or other signs. + Show the child how to do something, rather than simply telling him/her. + Identify what triggers meltdowns, so that they can be avoided. Let others who interact with the child know the triggers too. + Teach the child how to play with others and encourage other children to invite him/her to play. + Coach the child on how to read facial expressions, body languages and emotions.

“When distressed, Adnan will run around- he will make gestures to show that he is uncomfortable. One time, Adnan ate rat poison- but he could not speak. Baba, when he is distressed, he looks very sad. But Baba he will say if he is in pain. “

Education Every child has the right to an education. This is particularly crucial for children with autism, so that they can develop social skills as well as independent life skills. Ideally, children with autism should be enrolled in a Special Needs School. Otherwise, they should be integrated into normal schools as much as possible, where they can learn and play with peers. However, if they are enrolled in a normal school, it is important that their peers and teachers understand their condition, so that the child can be educated appropriately. If the child cannot attend school for financial reasons, they should recieve basic education within the community. At home, parents should coach their child through structured lessons. For teachers: + Teach the other students about autism. + Teach your colleagues about autism. + Be patient and consistent with the child. + Develop individualised lesson plans. + Keep the family informed about the child’s progress.

“We sent them to Yumba Special Needs School, where the teachers understand autism. They are now more sociable, they enjoy going out and they enjoy learning. You can see that whatever they teach them in school, they try to repeat it at home.�

Self-Help Strategies While it is important to remember that no single therapy works for every child, all autistic children benefit from even basic intervention and all will make progress. With consistency and perserverance, the following strategies have been proven to improve a child’s communication, play, social, academic, selfcare, work and community living skills. 1) Reinforcement Reinforcement (rewards and praise) increases appropriate behaviour, to teach the child those skills listed previously. + Break tasks down into small steps and build on what is learned. + Each time the child achieves the desired result, he/she should receive positive reinforcement such as verbal praise or something highly motivating, like a piece of candy. + The reward should be specific for your child. For example, if a child likes elephants, he may be given an elephant sticker or be allowed to play with an elephant toy each time he shows social skills or plays with other children. + Make sure your instructions for each behaviour is consistent. + Reinforce immediately after good behaviour. + Access to reinforcers, such as candy, should be limited when the wanted behaviours do not occur. This will ensure that its value is not lost. + Reinforcers can also be taken away for a bad behaviour. However, remember that punishment (e.g. hitting or yelling) does not work!

2) Visual Supports Visual supports are particularly important if your child cannot speak. A visual support refers to using a picture or other visual item to communicate. They can be photographs, drawings, objects, written words, or lists. They reduce anxiety, by setting routines and boundaries for your child. + These can be helpful to set boundaries. For example, if the child is allowed three pieces of toffee a day, you can pin up three drawings of toffee, and cross each out as the child takes the toffees throughout the day. + You can also set physical boundaries, for example putting up a “Stop” sign by the door at night, to ensure your child does not leave the house at night. If they try, point to the “Stop” sign and say stop. Remember to reinforce the behaviour with praise or a reward. + Visual supports can also help teach your child routines. For example, you may place a drawing of a toothbrush beside a drawing of a shower in your bathroom, to show the child that they should brush their teeth before taking a bath. It is important to reinforce the child after they complete the tasks so that they repeat it in the future.

References World Health Organisation (2004) GBD Report, Part 4: DALYs. In The Global Burden of Disease: 2004 Update. Retrieved July 9, 2013 from http://www.who. int/healthinfo/global_burden_disease/2004_report_update/en/index.html 1

BasicNeeds (December 2010) Share Learn Share. BasicNeeds Ghana, Newsletter, Issue 01, pp. 14. 2

World Health Organisation (October 2011) Fact File. In Mental health: A state of well-being. Retrieved July 9, 2013 from factfiles/mental_health/en/index.html 3

Bristol, M, Cohen, D.J., Costello, E., et al. (1996) State of the science in autism: report to the National Institutes of Health. J Autism Dev Disorders 26:121–154. 4

Elsabbagh, M., Divan, G., Koh, Y.-J., Kim, Y. S., Kauchali, S., Marcín, C., Montiel-Nava, C., Patel, V., Paula, C. S., Wang, C., Yasamy, M. T. and Fombonne, E. (2012), Global Prevalence of Autism and Other Pervasive Developmental Disorders. Autism Res, 5: 160–179. doi: 10.1002/aur.239 5

Autism is one of a group of serious developmental disorders called Autism Spectrum Disorders that appear early in childhood. This is a visually supported educational book about autism. It primarily serves to inform Ghanaian community members, including community health workers, teachers and families about the disorder.

Š BasicNeeds Ghana, 2013 Published in Ghana by BasicNeeds Ghana Tel: +233 (0)37 202 3566 Fax: +233 (0)37 202 4245 Email: Website: Office Location: House No.23 Fuo Residential Area Behind Regional Administration Tamale, Ghana Postal Address: P.O. Box TL1140 Tamale, NR Ghana Funded by: AT&T New Media Fellowship from the Watson Institute for International Studies at Brown University and The Creative Arts Council at Brown University Graphic design, photography and text by: Amanda Lee

BasicNeeds: Autism- An Educational Handbook