Once you have noticed the signs and symptoms of autism in yourself or your child, you may be wondering what the next step in your new journey dealing with autism will be. Where should you go next? Who should you see? What are the support systems, services and tools available?

Thankfully, there are many pathways and toolkits available. The first step is to understand how autism is assessed and diagnosed. This section will walk you through the steps of the assessment, from noticing early signs to getting a formal diagnosis and what to expect in each step. By learning about this process, you will be better prepared to support your child and find the right help and services.

Screening Toolkits & Pathways

M-CHAT is a checklist that can be used to look for signs of autism in toddlers between 16 months to 3 years old. The checklist provides questions about how your child plays, learns and acts, and has been scientifically reviewed by international experts, and is used around the world.

This checklist is available in the Buku Rekod Kesihatan Bayi & Kanak-kanak (0-6 Tahun) pages 64 – 66 as a tool for screening toddlers ages 0 to 3.

The Autism Treatment Evaluation Checklist (ATEC) is a checklist that helps parents/caregivers/therapists track a child’s progress with therapy after diagnosis. It is like a progress report of your child’s journey with autism and helps therapists track where your child needs more support and where they are doing well.

This score sheet can be used for children ages 3 and above, and adults as well.
Using the ATEC Score Sheet is as simple as answering all the questions in the given sections, and calculating

the total score from 0 to 180. It is available in English, Bahasa Melayu, and Chinese, and is accessible online.

Embrace Autism is a platform accessible online that provides a range of autism tests for adults that cover different areas, such as empathy, camouflaging autistic traits, and repetitive behaviours. Each test is rated by the website in terms of its wording, how clearly the questions are presented, and how accurate the tests are.

These toolkits help figure out if your next step is to seek professional help to get a proper diagnosis.

Diagnostic Process in Malaysia

If you do a screening for the child at home, the initial step is to consult with a GP, paediatrician or family medicine specialist.

Depending on their expertise, your child might be diagnosed or you may be referred to a health professional who is specialising in autism such as a developmental paediatrician, or child and adolescent psychiatrist.

Clinical psychologists may also perform specific tests to aid in the autism diagnosis but ultimately, a medical doctor has to sign off on the relevant forms, especially in obtaining OKU status and access to government services. Diagnosing autism is based on the professional’s clinical judgement, observations, and specific assessment tools. Getting a proper diagnosis from a professional is the first step.

But what does the diagnostic process include? Generally, the process includes:

1. Initial Referral

• Individuals suspected of autism are sent to a doctor due to concerns like speech delay or unusual behaviours.

2. Detailed History

• Information about the child’s development, birth details, and any risk factors (e.g., premature birth, low birth weight) are gathered.

• Family history is checked for autism or any other developmental issues.

3. Physical Examination

• The individual is examined for signs like unusual physical features, poor nutrition, or other health concerns.

4. Assessment of Behaviour, Play and Communication

• A look at the individual’s communication, play, interactions, focus, and unusual behaviours (e.g., repeated movements, unusual speech, sensitivity to sounds)

5. Developmental Assessments

• Tools are used to check if the child is meeting developmental milestones appropriate for their age for those aged 5 and below
• Professionals will apply autism-specific criteria for example from the DSM-5, focusing on social communication issues and restrictive, repetitive behaviours, interests and activities.

6. Check for Other Conditions

• Professionals will determine if there are other issues like ADHD, intellectual disability, or specific syndromes e.g. Fragile X
• Depending on the findings and the practitioner’s recommendation, Further tests might be necessary in another setting, for example, IQ tests or assessments for other conditions.

7. Additional Tests (ONLY as recommended by specialists)

• Genetic tests

• Brain scans (MRI) to look for structural problems.
  

• Tests for other possible conditions based on findings.

8. Diagnosis and Guidance

• Once diagnosed, the professional will explain the diagnosis to parents/individuals and suggest steps for treatment.
• The individual is referred for hearing and vision tests to check for related issues.
• Referrals to Occupational Therapists and Speech Therapists for detailed assessment to check functioning, difficulties and other issues.
• The autistic individual may be offered OKU Registration. (link to OKU Registration page)

9. Intervention Planning

• A treatment plan is created based on the child’s specific needs.
• Individuals are referred to speech therapists for communication skills as a priority and potentially to consider using tools like Augmented and Alternative Communication (AAC)
• Individuals are referred to occupational therapy for sensory issues, fine motor and attention training, executive function support, developing self-care and independence and other skills.
• Early Intervention Programmes (EIP) are the most widely available options suggested for young children, such as Applied Behavioural Analysis (ABA), Early Start Denver Model (ESDM) and other intervention strategies.

10. Follow-up Monitoring

• The child’s progress should be monitored and new challenges addressed as they grow.

Getting A Diagnosis

Going to get a diagnosis for yourself or your child is not “labelling”, but it’s important to identify and understand the child’s specific needs and the kind of support required. Determining the (preferably early) diagnosis is crucial so you can start planning and preparing for early intervention with the various programmes and services available.

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