Getting a Diagnosis and Navigating the Journey
Suspecting that your child, a loved one, or even you might be autistic can evoke a sense of uncertainty. You may have observed differences in communication, social interactions, or sensory responses. This awareness often leads to numerous questions and a desire for clarity, but the path forward can seem daunting. Where do you begin? Who should you consult? What does the diagnostic process involve?
Initial Support and Guidance
If the process feels overwhelming, consider reaching out to organizations dedicated to autism support. These organizations offer invaluable guidance and resources:
Understanding Autism, Part 2
(FreeMedEducation – Content written by an Autistic Person)
Understanding Common Areas of Concern
The challenges experienced by autistic individuals vary greatly. Common areas that often prompt families to seek a diagnosis include:
Speech and Language Development
Often, the first indicator leading to a diagnosis
Eating and Food
Difficulties with eating habits are common; ensuring adequate nutrition is crucial
Behaviour
Societal expectations can lead to masking. Stimming behaviors (e.g., hand flapping) are self-regulation mechanisms
Day-to-Day Tasks
Routine activities like brushing teeth, hair care, washing, and toilet training can present unique challenges.
Sensory Issues
Highly individual; includes Sensory Seekers, Tactile Defensiveness, Vestibular Defensiveness, or Oral Defensiveness.
Developmental Check-ups
“Check-ups are done at six weeks, five months, ten months, 1 year and then every six months until they go to school” – Paediatricians
The Diagnostic Journey: State vs. Private Healthcare
The Referral Process: Choosing Your Path
State Healthcare System
If you visit a day clinic or GP, you may be referred to specialized hospitals like Tygerberg or Red Cross Children’s Hospital. A referral can also be made via the VULA app.
If you choose the State system, hospital teams can assist with SASSA grants and school placement lists for government-funded schools.
UPDATE OCT 2023: Tygerberg’s Neuro-developmental Clinic now primarily sees children between 0-6 years. Re-assessments (every 3-4 years) must be initiated through your local clinic’s psychiatry department. A referral to Red Cross DCAP is possible only if the child was originally seen by Tygerberg.
Diagnostic tools commonly used by the State include DSM-5, ADOS-2, ADI-R, M-CHAT, and CARS-2.
Private Healthcare / Medical Aid
A GP with medical aid will typically refer to a paediatrician/neuro-paediatrician, and a Psychologist or Psychiatrist. They may also suggest private schools or assist with school placement.
For older children, an Educational Psychologist might be recommended, who can then suggest therapies like Occupational Therapy. Many autistic individuals are treated for co-occurring conditions (ADHD, OCD, anxiety), as there is no specific “treatment” for autism itself. While families with medical aid may not qualify for SASSA grants, relevant expenses can often be claimed from SARS.
In addition to State tools, private practices may also utilise DISCO (The Diagnostic Interview for Social and Communication Disorders) and DIVA (The Diagnostic Interview for ADHD in adults).
The Ideal Support Team:
Navigating autism care involves a multidisciplinary team. Here’s a breakdown of the specialists who may support your child’s journey:
Core Specialists
Pediatrician / Developmental Pediatrician
- Oversees overall health and growth.
- Coordinates referrals to specialists.
- Tracks developmental milestones and co-occurring medical conditions.
Child Psychologist / Neuropsychologist
- Conducts diagnostic assessments for ASD.
- Evaluates cognitive strengths and behaviors.
- Provides therapy for emotional regulation, anxiety, or social skills.
Speech and Language Therapist (SLT)
- Works on verbal, non-verbal, and alternative communication methods.
- Helps with language comprehension and social communication (pragmatics).
Occupational Therapist (OT)
- Supports sensory integration.
- Improves fine motor skills, daily living skills, and self-regulation.
- Helps adapt environments for better participation.
Educational / Special Needs Teacher
- Adapts learning materials to suit strengths and challenges.
- Implements Individual Education Plans (IEPs) or accommodations.
Additional or Supporting Specialists
These specialists may join the team based on your child’s specific needs and evolving development:
Behavioral Therapist
- Helps shape adaptive behaviours and reduce challenging behaviours.
- Focuses on skill-building using structured techniques.
Clinical Social Worker
- Supports the family with counselling and advocacy.
- Helps navigate services and funding options.
Physiotherapist
- Addresses gross motor skills, posture, balance, and coordination issues.
Nutritionist / Dietitian
- Monitors diet for children with restricted eating or gut issues.
- Advises on nutrient deficiencies or special diets (if clinically indicated).
Genetic Counsellor / Functional Medicine Practitioner
- Explores underlying genetic or biochemical contributors.
- Helps interpret genetic testing and supports personalized interventions.
Psychiatrist (if needed)
- Evaluates and manages co-occurring conditions like ADHD, anxiety, or depression.
- Prescribes medication when appropriate.
Recommended Specialists (Western Cape)
This is the list of specialists and organisations, primarily located in the Northern Suburbs of Cape Town, that we used. Many more specialists are available in the Southern Suburbs.
Further Reading & Videos
The New Way of Understanding Autism & Social Behaviour | Dr. Suzanne Goh & Jim Kwik – http://www.youtube.com/@Dr.SuzanneGoh