Our Voices Count: Dyslexia Victoria Support in Academic Research

In June 2025, a paper I was part of was accepted for publication in the Educational and Developmental Psychologist, “The actual diagnosis was a relief after everything settled down, but getting to that point was really difficult”: parents’ perspectives on dyslexia assessment and diagnosis in Australia. That might sound like a small thing, but for me, for Dyslexia Victoria Support (DVS), for other Australian parent support groups, and for parents across the country, it is massive.

For years, parents in our community have been saying the same things. Getting a dyslexia diagnosis is both a relief and a battle. Relief, because you finally get answers. Battle, because the road there is long, stressful, and expensive, often costing families thousands of dollars.

What the research showed

The study surveyed 80 parents across Australia. Here is what stood out:

• Stress before diagnosis was overwhelming. Three out of four parents found the wait “quite” or “very” stressful.

• It takes too long. On average, three years passed between first concerns and diagnosis.

• Costs are crushing. Families paid anywhere from nothing (rare school-based assessments) up to $3,500. Satisfaction was highest when no cost was involved and lowest when families paid more than $3,000. As one parent said, “The assessment cost thousands, and we had no choice — it was the only way to get answers.” Another added, “The school did not accept the diagnosis, even after we spent $3,500 on it.”

• Support after diagnosis is patchy. Forty-one percent of parents were dissatisfied with follow-up.

• Schools often dismiss the diagnosis. Only 58 percent of parents said their child’s school accepted it, and just 55 percent said the assessment led to support.

Parents called for five urgent changes:

1. Make assessments affordable and accessible.

2. Cut waiting times with earlier screening and clear referral pathways.

3. Provide clear, practical information at diagnosis.

4. Guarantee structured follow-up for families.

5. Ensure schools accept and act on the diagnosis.

As one parent put it, “Schools don’t recognise it or provide the support my child needs.” Another described the relief when schools did respond: “It was a relief once the diagnosis was recognised at school — finally support was put in place.”

Why it matters

When I saw my name next to the Monash University researchers Dr Hayley Anthony, Associate Professor Andrea Reupert, Dr Louise McLean, and Dr Aspasia Stacey Rabba, I paused. For once, parent voices were not just background noise. They were part of the record.

This is not about me, and I am very grateful for the acknowledgement. This paper would not exist without the courage of the 80 parents who shared their experiences through the study. Their honesty about stress, cost, delays, and the fight for school support made the findings powerful and undeniable.

It is also about every parent who has shared their story in DVS since we began in 2014. Every late-night message, every “is this just me?”, every post about costs, stress, or being ignored at school. This research proves those experiences count.

At DVS, we have always welcomed authentic research that listens to parents and respects lived experience. Having our voices included in studies like this makes the work we do stronger. It helps us push for change that is backed by both evidence and community truth.

Looking forward

For policymakers and schools, this study is now on the record. They cannot brush parents aside as if it is anecdotal. The evidence is there, and it matches what our community has been saying for years.

For parents, I hope this shows that your story matters. Speaking up makes a difference. Our voices are shaping not just support in schools, but the research that will drive change in the future.

June 2025 will always be the month our voices moved from Facebook posts and support group chats into an academic journal. And that belongs to all of us.

A thank you to parents

To every parent who took part in the study, thank you for your courage in sharing your experiences. To every parent in DVS, thank you for your honesty, your persistence, and your trust. This recognition is yours. Together, we have made sure that the struggles and triumphs of families are not invisible, but visible, measurable, and impossible to ignore.

Reference

Anthony, H., Reupert, A., McLean, L., Rabba, A. S., & Gregory, H. (2025). “The actual diagnosis was a relief after everything settled down, but getting to that point was really difficult”: Parents’ perspectives on dyslexia assessment and diagnosis in Australia. Educational and Developmental Psychologist. Accepted 17 June 2025. Advance online publication. https://doi.org/10.1080/20590776.2025.2545250