[Contributor Desiree Kaur previously wrote ‘My Story: Beginning My Journey With a Special Needs Child‘. She continues to share the journey she is on with her son]
There is no parenting book or blog that can prepare you for the moment you have to utter the words “My child has autism”. A week after I received this official diagnosis, it suddenly dawned on me – What did I know about autism? The answer scared me: Not enough.
If only there was a how-to guide that magically appeared on my phone on demand, I thought. In case you find a similar need to know more, I hope the following information and resources that I had to go through are helpful.
What is Autism?
Autism Spectrum Disorder – also known as ASD – is a development disorder where the brain doesn’t develop in a typical manner. Symptoms include repetitive behaviour, inability to develop social skills and difficulty acquiring language. There may also be a lack of eye contact and interests or obsessions with only certain things. The Raising Children’s website offers plenty of useful and practical insights on autism.
How is Autism diagnosed?
It can be diagnosed as early as 18-months by a Child Development Consultant / Developmental Paediatrician, Child Psychiatrist, Child Psychologist or Paediatric Neurologist. An assessment will be conducted with the parents and child. It takes approximately one to two hours. Parents will be asked about their family history, the pregnancy and the child’s development since birth. The specialist will also interact with the child. They will observe their behaviour and conduct small tasks with them before completing the assessment. The specialist typically provides a diagnosis immediately and recommends next steps such as therapy or any additional tests.
Levels of Autism
The level of autism determines how much support the child needs. There are three levels of classification for autism:
- Level 1 – Requiring support
- Level 2 – Requiring substantial support
- Level 3 – Requiring very substantial support
For more information on these levels, read ‘Making Sense of the 3 Levels of Autism’
Occupational Therapy, also known as OT, is usually conducted by a qualified Occupational Therapists (typically degree holders). OT provides a personalised approach to address concerns in the areas of self-esteem, cognitive, motor skills, and physical and sensory issues. While the diagnosis is already rendered by a doctor, the occupational therapist will assess the child in order to plan sessions that will be beneficial. Therefore, it is common practice for the first session to cost more than the follows ups.
Speech Therapy is also recommended for non-verbal toddlers with autism. It is usually conducted by a Speech Therapist or sometimes known as Speech Language Therapist (SLT). They are not doctors but specialists to aid with language learning issues, speech, listening and writing skills. There are even some who specialise in eating difficulties. It is important to note that not all speech therapists work with children, therefore remember to search for Paediatric or Child Speech Therapists. Similar to OT, the first session is usually an assessment and will cost more than follow up sessions. The Malaysian Association for Speech-Language and Hearing (MASH) publishes a comprehensive list of SLTs across the country here.
Early Intervention Programmes
I define EIPs loosely as kindergarten for toddlers and children with special needs. Most EIPs are designed as half or full day programmes, depending on the approach and centre. It usually incorporates various elements of Occupational Therapy, Speech Therapy and Physical or Physiotherapy for children with special needs. Most EIP accept children from 3 years and above. Younger children require recommendations from an Occupational Therapist prior to enrolment. EIP also prepares children with special needs for primary school (typical or special needs schools).
What about a typical kindergarten as an option?
Yes, sometimes the doctor may recommend it depending on the child’s level of autism. Also, bear in mind not all kindergartens will accept children with special needs. There is always a concern about more severe cases where violent behaviour is present. Some kindergartens actually cater for both typical and special needs children, with occupational therapists kept on staff. Some kindergartens do not provide therapists but are open to accepting special needs children on a case-by-case basis. However, before you visit a typical kindergarten, be sure to call ahead and ask if they accept special needs children.
Mummies, it is okay
My discovery, although uphill, doesn’t have to be for everyone. Only much later did I discover that special needs is more common than I realised, and all I had to do was reach out. Along my journey, I have become acquainted with some pleasant people who shared some of their experiences with me. There is still so much I don’t know and I continue to learn with each therapy session my son attends. Yes, it is definitely overwhelming but I am thankful each day for a supportive family to lean on. My husband tells me to slow down from time to time and I am grateful to have someone tell me “It’s ok to slow down.” So, if you are a mummy new to autism like me, I would like to say “It’s ok to take a break and slow down.”
By Desiree Kaur
Desiree Kaur worked in public relations for over 8 years until she ventured into teaching. She now owns a tuition centre and spends most of her time with her 2-year-old son.
Stay tuned to makchic.com for Desiree’s continuing journey with her autistic child.