Finding Our Family Rhythm: A Shared Journey Toward Diagnosis

Every child’s journey to understanding their needs—and every family’s path to accessing support—is uniquely personal. For our family, that journey has unfolded three times over with our daughters Matilda, Ruby, and Paige. Each has navigated her own route through Australia’s public and private systems, clinical assessments, and the NDIS. Here’s how we’ve learned to find our rhythm.

1. Where to Begin: Public vs. Private Pathways

Public Child Development Services

• Supports children aged 0–9 with developmental concerns
• Low- or no-cost services (GP referral required)
• Expect lengthy waitlists and limited appointments

Private Paediatricians

• Fees apply, but Medicare rebates and Safety Net caps may help
• Generally faster access if you can afford it and secure a referral
• Many clinics still have 12+ month wait times—ask to join cancellation lists

💡 Pro Tip: Register with multiple providers as early as you can. Cancellation spots can save you months of waiting.

2. Understanding the Diagnostic Toolkit

After seeing a paediatrician, your child may be referred for formal assessments to meet DSM-5 criteria. These may include:

• ADOS-2: Structured play and behaviour observation
• ADI-R: In-depth parent/caregiver interview
• MIGDAS-2: Guided observations and conversation
• WISC: Cognitive testing
• Functional Skills Assessments: Daily living and independence
• Therapist & Teacher Reports: Professional insights from speech therapists, psychologists, educators, and OTs

All of this feeds into a comprehensive report that a qualified professional uses to determine a diagnosis.

3. Accessing the NDIS: Age-Based Entry Points

The National Disability Insurance Scheme (NDIS) provides funding for therapy, equipment, and supports—but the path to access varies by age.

Early Childhood Approach (Ages 0–9)

• Ages 0–6: No formal diagnosis required
• Ages 7–9: Requires a diagnosed permanent disability
• Steps to Apply:
  1. Locate your Early Childhood Partner via the NDIS website
  2. Complete an Access Request (by phone or in person)
  3. Submit a Carer Impact Statement and a “Day in the Life” summary
  4. Attend a planning meeting to develop goals and support plans

Note: The NDIS does not cover diagnostic assessments—confirm with your plan manager.

School-Age Access (7+ Years)

• Requires a formal diagnosis (ASD, ADHD, or another eligible condition)

4. Our Daughters’ Journeys

Matilda (10 years old, Grade 5)

• Signs: Masking at school; meltdowns at home
• Steps: Waited 12 months for a paediatrician → ADOS-2 + Vanderbilt screener → WISC ($350 at a university clinic)
• Outcome: Diagnosed with Autism Level 1 and ADHD-Inattentive
• Next Steps: Therapy reviews every six months and medication monitoring

Ruby (7 years old, Year 1)

• Signs: Separation anxiety in Prep; increased behavioural issues in Year 1
• Steps:
  • Early Childhood NDIS approval with Global Developmental Delay
  • Paediatrician: ADHD diagnosis + ADOS (no ASD initially)
  • Switched paediatricians: Updated reports and ASRS assessments
• Outcome: Autism Level 2 diagnosis after 12 months of therapy
• Supports: Funded OT, speech therapy, psychology, and school adjustments

Paige (11 years old, Year 6)

• Signs: Executive functioning difficulties; flagged by teachers
• Steps:
  • Waited 12 months → Completed ASRS + Conners-4
  • ADHD confirmed; also addressing iron deficiency
  • Upcoming MIGDAS-2 and 5-month follow-up pending
• Status: In progress—awaiting formal outcome for ASD/ADHD

5. What We’ve Learned Along the Way

• Start Early: Join public and private waitlists ASAP. Ask about cancellations.
• Gather Evidence: Assessments, therapist notes, teacher input, and impact statements help build a strong case.
• Advocate Hard: You know your child best. Keep pushing for the right answers and supports.
• Know the System: Understand NDIS pathways and tailor your documentation accordingly.
• Find Your People: The right professionals—who truly "get it"—make all the difference.

Your Turn

The process can feel overwhelming, but with persistence and preparation, you’ll find your rhythm too. If our journey helps even one other family feel less alone in theirs, it's been worth it.

What’s your story? Share your challenges and wins in the comments. Let’s support each other through this journey.