Photo by Abdul Basit © The Peninsula
Raising a child with Autism Spectrum Disorder (ASD) can be complex and challenging for parents and caregivers as they have to face many issues on a day to day basis.
Each child with autism is a unique individual, with unique needs and abilities and many parents find themselves in a constant flux of wondering and worrying about how to cope and best help their child.
Sidra Medical and Research Center’s (Sidra) approach to caring for children with ASD is to provide care for the whole family. The concept ties in closely with Sidra’s overall goal to provide patient and family centred care across all facets of health delivery.
At Sidra, the Division of Developmental Pediatrics (DDP) and Child and Adolescent Psychiatry clinics currently provide multiple services for children and young people with ASD. This includes comprehensive diagnostic assessments and treatment recommendations. The clinics also provide evaluation services for children with comorbid emotional and psychiatric issues.
Dr Fatima Janjua, Division Chief for the DDP, explained that, children referred with suspected ASD participate in a multidisciplinary assessment, on the same day, by a team of doctors, a psychologist, therapists and nurses. This approach allows for a more accurate and immediate diagnosis, which in turn leads to earlier intervention.
“Children with suspected ASD are referred to us from a range of sources. On Sundays, we have two hours of assessments for these children. When I start seeing the children and family in one room with one of the therapists, others in another room will be observing through a video link. At some point we swap, so at the end we not only have a medical assessment but also a multidisciplinary assessment. The information is then produced into a joint report,” Dr Janjua told The Peninsula.
Dr Janjua, also a founding member of the National Autism Strategy Workgroup and co-writer of the Qatar National Autism Plan said, “We are currently finalising the Qatar National Plan and the final document is the result of an extraordinary multidisciplinary and multiagency effort which involved both statutory and voluntary agencies including the Qatar Autism Families Association. As a professional recently arrived in Qatar, it was very gratifying to work with so many experienced and knowledgeable colleagues from different institutions, all fully committed to establish modern, evidence based, comprehensive and family centred Autism services in Qatar.”
“In autism like many other conditions, early intervention is the key for the best outcome. By helping parents to understand how the child functions, and why they behave in a particular way, we are teaching parents how to approach the child in the right way. This can prevent many unavoidable challenges for both the parent and the child.. If the child is happy and relaxed it can help them gain self-care, social, and communication skills” she added.
Sidra through its services advocates community based approach involving parents and families.
Dr Ahsan Nazeer, Division Chief of Child and Adolescent Psychiatry from Sidra (CAMHS) said, “Family is an integral part of the care and significant effort goes into educating them during sessions at our clinic. With the right support to the families – they in turn can help their child to learn, grow and thrive. Each family receives a detailed report of initial evaluation about the child. The report provides a valuable record of the current functioning, diagnosis of the child and possible treatment recommendations. Families can share this report with schools and different community organizations to receive appropriate services for their child.”
In addition to accepting referrals from Hamad Medical Corporation and Primary Health Care Corporation - the Sidra DDP and CAMHS clinics also accept referrals from schools.
“Accepting ASD referrals from schools is unique to Qatar. We are working closely with different schools to provide education, guidance and to help them with children who are in need of evaluation and treatment interventions. Our recommendation and approach for the teachers is to use the SPELL framework which recognizes strengths of the child and emphasizes that interventions should be based on - structure, positive approaches, empathy, low arousal and links (between child’s life and various components of the program),” said Dr Nazeer.
Sidra is currently part of a National Autism Working Group – which is under the auspices of the Ministry of Public Health. The group includes a dedicated consortium of various ministries, the public and private sector, hospitals and most importantly parents and care givers who are part of the Qatar Autism Families Association. The group is working closely to finalize a Qatar National Autism Plan. The plan is based on six pillars - Awareness; Early Recognition and Screening; Diagnosis and Assessment; Interventions; Education and Transition into Adolescence, Adulthood and Elderhood.
Dr Muhammed Waqar Azeem, Chair of the Department of Psychiatry at Sidra, who is also Chair of the National Autism Working Group and Co-Chair of the WISH Autism Forum said, “The government in Qatar’s commitment to supporting families of individuals with Autism Spectrum Disorder is admirable. As a community and as a nation – our focus for caring for individuals with ASD should be to help them become an integral part of society and to feel safe and respected. I am confident that the national autism plan that is being developed in Qatar will have a major impact in improving the lives of individuals with autism and their families and that eventually, it can be a model for other GCC countries.”
Autism is a neurodevelopment disorder. It is a lifelong developmental disability that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people. All autistic people share certain difficulties, but being autistic will affect them in different ways.
Dr Nahed Alateeqi, Senior Attending Physician, Division of Developmental Pediatrics at Sidra said, “We always advice parents, if you see or sense something is not quite right with your child please seek medical advice early. There is no harm in getting reassurance that the child has no major problems. And if there is a problem, the earlier we know and understand the issue and get the right intervention – the better the outcomes. Once a diagnosis has been made, it is understandable that some parents will be shocked and stressed. Our recommendation is to take your time to accept it but then learn about the services available not just for the child but for the family as well. Parents and caregivers need just as much support and education about the condition to take care of the individual.”
Besides the clinical healthcare servicesat Sidra, a team of health promoters including Najla Ahmed Bawazir, Noof Al Taweel and Fatima Al Mohanadi will also be playing a big role in helping families identify and manage children with autism.
Today as part of World Autism Awareness day they will educate visitors to Sidra about the importance of identifying autism at early age.
“People might question why they should learn about autism – particularly if no one in their immediate family has the disorder. However, by educating yourself, you will be helping someone else – whether another family member, a friend or a colleague -who may have an autistic child. Whatever awareness or knowledge you have may help the person in question to go and seek help,” say the health promoters.
For one day only – patients coming to Sidra today ( April 2) can seek more information about ASD including the sensory problems in touch, smell, hearing, taste and sight among autistic children. Story telling sessions in Arabic and English, awareness videos and posters will be also feature at the Sidra outpatient clinic on the day.
Focus on the positive - Praise your child for the good behaviour - like every other child they will respond well to positive reinforcement. Understand Autism - One of the most important factor in the child’s progress is parents’/caregivers’ acceptance and participation in the intervention program. In children with ASD, your understanding of the underlying reasons for your child’s behaviors will help you to be actively involved in managing them on a daily basis. Family involvement increases the amount of intervention time delivered to the child in a natural environment and has a positive impact on developmental outcomes.
Schedules are important - Children with Autism Spectrum Disorder feel safe and secure when they know what to expect each day. Having a daily schedule will help them to have a sense of structure as they will know what they will be doing each day. - it will also make your life easier.
Build a support network - Make a list of the people (family members, neighbors, relatives, other families who have children with autism, teachers etc.) who can help you and pick up that phone call. Other parents will be the best resource for understanding what causes challenging behaviors and how to deal with them. They will also provide you with a friendly space and understanding ear and will help you remember that you are not alone.
Avoid burnout by taking care of yourself - Like in all new circumstances, allow yourself time to get used to your child’s challenging behaviors and try to focus at one thing at the time. Be on the lookout for sign of burnout that usually include; fatigue, irritability, changes in sleep pattern, avoiding friends, feeling of helplessness, crying and feelings of hopelessness. If you feel that you are suffering from burnout, seek help; call you doctor, talk to your family members and ask for help, eat healthy diet, exercise and go out with your friends to some relaxing activities. Ask, ask, ask!
