Your child has just been given a diagnosis of autism. You are shell-shocked. What should you do now and how will you and your family go through this? Dr Lim Hong Huay, Consultant at the Department of Child Development at KK Women’s and Children’s Hospital, guides us on the next step.
When a child is first diagnosed or suspected to have autism, it can be a very challenging time for the child’s parents and the family. In this early period, many things need to be promptly put in place for your child to obtain help as soon as possible, yet parents and care-givers also need to stay calm, take a step back, and take stock of the situation, so as to be more ready to journey with your child into the future.
In 2010, the Ministry of Health published clinical practice guidelines for Autism Spectrum Disorder in Pre-school Children.
The guideline provides comprehensive information regarding autism and its management in Singapore and should be used as a basis for your decisions and selection of team members and resources to help you and your child.
Here is a step-by-step guide on what to expect, from initial diagnosis to seeking treatment.
Step 1: Needs and Diagnostic Evaluations
What does your child need?
In general, your child’s needs should be identified as early as possible, so that any early referral to intervention services can be made. This is to tap on the potential of neuroplasticity in a young brain. Scientific evidence has shown that intervention provided earlier is associated with better outcomes in later life.
So do seek help early. Do not hesitate or wait in the hope that he will just “out-grow” it.
Be aware that the confirmatory diagnosis of your child may take some time. The diagnosis for autism is complex. Each child is unique. There is no single diagnostic test for autism. Diagnosis is often not accomplished in a single visit, but rather, is usually achieved through carefully planned multi-staged sessions across months.
More often than not, an accurate diagnosis requires comprehensive information about your child’s behaviour from birth till age of presentation, as well as across various natural daily contexts, e.g. home, pre-school, child-care, etc. Multiple diagnostic questionnaires or tests may be used to gather feedback or observational evidence so as to fully understand your child. This is especially if your child is still very young, or if his symptoms are milder at presentation. In some children, further medical investigations, such as brain scan, electroencephalography (EEG), metabolic or genetic tests may be required to look for underlying causes of autism.
For a life-long diagnosis such as autism, the diagnostic team should (rightfully) be prudent in ensuring accuracy and specificity of the diagnosis. In Singapore, comprehensive diagnostic services are available in KK Women’s and Children’s Hospital and a few other health institutions.
What do you need?
• You may not like what you are hearing from the diagnostic team.
• You may not believe what they say about your child.
• You may look at your child and realise that all your dreams about your child are vaporising in front of you.
• You may be angry and ask “Why me?”
• You may want to wake up in the morning to find that this is all a nightmare.
It is all right. You are not alone. Many have walked this journey before.
Find a quiet place to let it all out. It is all right to cry.
Talk to someone whom you can trust to just listen and not give advice or get more worried than you.
Take time to grieve.
After you have done all that, come back to your child again and cuddle him tight. Look at his face and tell yourself: “He is the same child I knew yesterday, the same child I will love no matter what”.
Parents can find out more about autism by reading books written by other parents or by people with autism. You can also look up information about autism from credible web sources.
The journey may be long, but you do not have to go through it alone. Do not be afraid to ask questions, and be honest about your needs. No question is wrong, and no parent is perfect.
Work hand-in-hand with the diagnostic team and, subsequently, the early intervention team. They are here to help you and your child. A combative attitude is at best discouraging, and at worst, alienating. Remember that it takes a village to raise a child who has autism. So start gathering the villagers as early as possible.
Step 2: Access Early Intervention Services
What does your child need?
As soon as your child is identified to have developmental needs, your diagnostic evaluation team should help you to firstly, understand autism and the services available, and secondly, make decisions before referring your child to an appropriate early intervention programme. To offer additional support to the family, the team should also share various family resources available, such as family support programmes, as well as parenting and community resources.
Most major diagnostic centres will assist to arrange for interim early intervention and support services if there is a need for these before the commencement of a formal early intervention programme. These services may include psychological intervention, speech therapy, occupational therapy and physiotherapy.
Ideally, early intervention services should be prioritised according to your child’s needs, well-coordinated through a trans-disciplinary approach, delivered through family-centred means, and aimed to improve your child’s daily functioning. Research has shown that multiple therapy sessions which focus on non-functional goals, and which are not coordinated and delivered in family-centred fashion may have an undesirable effect and undermine the confidence of parents and care-givers.
What do you need?
Every child has his unique personality, preferences, and strengths, and faces different challenges. As you grasp the information from the diagnostic team about your child, and while you attend the early intervention sessions or programmes, you will start to learn more about your child in ways that you never knew before. In understanding him, remember that his greatest weakness may become his greatest strength. Know him as a person, the way he deserves to be understood and respected.
Similarly, you will have your personal beliefs, expectations, needs, and sources of support and stress. Reflect on these and make necessary adjustments. Rein in your anxiety and fear, as your child is able to sense them. If the need arises, find a place in your home and designate it as your own “cool down” corner. Parenting a child with autism comes with its own challenges, so every now and then you will need your personal space and time to reflect. When you feel down, tell yourself you are not a weakling, you are not useless. You just need to rest, refresh and then stand up and try again. Remain positive at all times.
Thirdly, read up about autism. Gather the knowledge. Appreciate the difference and embrace the beauty of people with autism. While people with autism exhibit different cognitive patterns and may think differently from us, it does not mean that they are abnormal. We should therefore, adjust our thinking to understand them, in order to help them function better in this world.
Step 3: Participate in Early Intervention Programmes
What does your child need?
Typically, early intervention programmes in Singapore are provided in a range of public and privately funded organisations.
The Early Intervention Programme for Infants and Children (EIPIC) is the keystone of early intervention programme for pre-school children with special needs in Singapore. This programme takes the form of individualised early intervention, often within a group, and is mostly centre-based.
In the process of enrolling your child into an early intervention programme such as EIPIC, EIPIC centre staff will often conduct an initial intake assessment to understand your child and your family. This helps the programme staff to match the objectives of their programme to the needs of your child.
Thereafter, there will be a settling-in period for your child in the programme. Teachers and supporting allied health professionals will take this time to understand your child’s profile and developmental needs, so as to formulate goals and an individual educational plan (IEP) for your child. After this, early intervention will be provided holistically through the EIPIC teachers, with support from allied health professionals. Direct therapy services are available at variable levels across the programme.
Your child’s progress will then be periodically evaluated to improve on the IEP. Nearing exit from the EIPIC programme, the EIPIC team will work with the diagnostic team to formulate a transition and educational placement plan.
What do you need?
You are the most important person in your child’s life. You will know and understand your child better than anyone else, simply because you spend more time with him.
Thus, it is very important that you rise up to your role as an equal partner with the team of early interventionists (teachers, therapists, social workers) who are supporting your child and you in the programme.
As you work with the early intervention team, remember that your goal is to give your child a happy childhood and teach him to be as independent and self-learning as he can be in the future. Early intervention is not just about getting him as many therapy sessions as possible. It is about creating opportunities in a natural context in his daily life to teach and facilitate practice of new skills and behaviour. So remember, the more interested he is and the more practices he gets in his daily life, the better and faster he will learn.
Hence, in working out the functional goals that will help your child and your family, think about how you and your family go about your daily lives. Share these with your early intervention team so that intervention goals and strategies can be embedded into family time. Set realistic targets and functional goals for yourself, your child and your family. This may take a while, but it is well worth the time. Strive to make life better for everyone in the household, not just your child with autism.
As your child settles into the early intervention programme, strive to establish a viable and steady communication channel with the early intervention team. By knowing what your child has learnt in the programme, you will be able to help him generalise these skills into his daily life. However, avoid the trap of becoming your child’s therapist. You are his mother (or father). So love and walk with him like one.
Last but not least, make time for yourself, your spouse and your marriage. A strong marriage goes a long way.
With this, I encourage every parent of a child with autism to laugh and have a great sense of humour. This journey can be sunny, if you let the sunshine in.
2 April is World Autism Awareness Day. In Singapore, World Autism Awareness Singapore is dedicating the month of April (and beyond!) to sharing knowledge of the condition. Find out more about their talks and activities here.