Overview

Over two per cent of Victorian children up to the age of 11 are diagnosed with autism, with 30 percent of those said to have lost language and social skills over time. Of those who lose skills, a smaller proportion will experience substantial regression over a period of just weeks or months. Little is known about the causes of this severe and rapid loss of skills.

The Loss of Skills study will collect high-quality information about children with autism or social and communication impairments consistent with autism who have a substantial loss of skills. By focusing on children up to age seven, researchers hope to discover possible causes as well as describe clinical subtypes of loss of skills, and to be able to link the two.

The project is part of our Pathways to Autism project that aims to understand the condition by studying groups of children with neurodevelopmental differences to identify patterns that could shed light on other types of autism.

Information for participants

Who can participate?

• Children who live in Victoria are diagnosed with autism or who have social communication impairments consistent with autism, and diagnosis is strongly suspected.
• Experienced loss of well-established skills, such as a change from communicating using words and gestures to not talking and not communicating in other ways.
• Aged 10 or under.

What is involved?

• We will ask you and your child to complete activities that will help researchers learn about your child’s thinking skills, language, communication and behaviour.
• We will ask you about your child’s experiences and current abilities.
• With family consent, we will collect biological specimens such as saliva, and blood (optional sample) for genetic testing and future ethically approved studies. 
• We will complete a follow-up review.

Each family will receive a descriptive summary of their child’s assessment performance.

Please note: This study is strictly recruiting children up to the age of 10 years who have experienced severe and clear loss of skills. If your child does not meet these eligibility criteria, unfortunately, they cannot be considered for inclusion in this project.

Resources

If you have concerns about your child’s development, please contact your GP or paediatrician.

• Autism spectrum disorder (ASD)
  
  

Autism organisations in your State or Territory

• Amaze - Victoria
• Autism Spectrum Australia
• Autism Western Australia
• Autism SA
• Autism QLD
• Mary Mead Autism Connect (ACT)
• Autism Tasmania
• Autism NT

Support networks, peak bodies and information sources

• Reimagine Australia
• About Autism - Raising Children Network
• Early Days
• Children and Young People with Disability Australia
• Positive Partnerships

Collaborators

The Loss of Skills project is also being supported by:

• BioAutism Ltd
• Financial Markets Foundation for Children
• The University of Melbourne’s William Collie Bequest

Approved by Royal Children’s Hospital Human Research Ethics Committee: #37085.

Monash Children’s Hospital has been approved as an additional site.

Contact us

Loss of Skills study
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia