The EMPOWER-Autism programme was developed from existing evidence-based clinical practice within the UK and abroad. It was developed by a range of NHS clinicians, researchers, and experts by experience (parents of autistic children and autistic adults). It has been designed to be deliverable within the NHS and aims to address the needs of parents in the months following their child’s autism diagnosis. 

We carried out an initial study of feasibility and acceptability before we started the larger randomised controlled trial.

Read more about the development and feasibility testing of the programme here:

https://journals.sagepub.com/doi/10.1177/13623613241274566

The REACH-ASD trial was carried out with 379 participants in Greater Manchester, East Lancashire, and Cheshire West. The trial started in 2020, and has been carried out over three years. Participants were parents/primary caregivers of a child aged between 2-15 years, who had received a diagnosis of autism in the last 12 months.

Parents met with an independent researcher at four timepoints over the course of a year. The researchers collected information on parental mental health and other measures relating to parent, family and child outcomes. Two-thirds of parents, chosen at random, were invited to attend an EMPOWER-Autism programme; whilst a third of parents continued to receive their usual post-diagnostic services. We then analysed whether there were any differences in outcomes between these two groups. 

Over 1% of UK children are diagnosed as autistic. Following the diagnosis, some parents feel relieved that their child’s needs have been formally recognised and understood. Other parents describe worry, shock or confusion. Some parents experience stress about a lack of appropriate support for their child. Many are desperate to understand more about autism and the best ways to help their child.

Health guidelines recommend post-diagnosis family support. However, current provision is patchy across the UK. This inconsistency in availability is a source of increasing dissatisfaction for both parents and professionals. Most support programmes for parents of newly diagnosed children do not directly address parent’s own mental health and wellbeing. Parental mental health is important in its own right, but also because parents need to be well regulated to be able to regulate their child and to parent in an informed and attuned way, Parents also unfortunately often need to navigate complex support systems and fight for the right help fo their child. Post-diagnosis support which offers high-quality and empowering information about autism and addresses parental mental health and adjustment could therefore bring benefits to the parent and whole family.

If Empower-Autism were shown to be effective, it could fill a key gap in the provision of effective support for families of autistic children from diagnosis onwards.

The results of the trial are now published in the Lancet Psychiatry:

https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(25)00036-7/fulltext

Compared to usual care, the Empower-Autism programme significantly improved parents’ and carers’ mental health. It also improved their wellbeing, autism knowledge, adjustment to the diagnosis, and the wellbeing of their wider family.

The study did not find that the new programme led to significant improvements in parenting stress, confidence in parenting skills, family emotional environment, child independent life skills, or child emotional and behavioural difficulties.

Both groups within the trial experienced similar numbers of negative life experiences, so the programme did not bring about negative effects.

• Sofia Ahmed
• Hilary Beach
• Penny Bee
• Charlotte Butter
• Petrina Chu
• Linda Davies
• Alison Dunkerley
• Ceri Ellis
• Richard Emsley
• June Gilbert
• Caitlin Goldie
• Jonathan Green
• Latha Hackett
• Liam Hadfield
• Louisa Harrison

• Rebekah Howell
• Tessa Hutton
• Kirsty James
• Leo Kroll
• Sophie Langhorne
• Amelia Pearson
• Katy Rowe
• Aleix Rowlandson
• Gemma Ryan
• Cameron Sawyer
• Gemma Shields
• Richard Smallman
• Amy van Gils
• Ellen Worrall

The trial results were positive and we recommend this programme to clinical teams wishing to support the mental health and wellbeing of parents and carers of newly diagnosed autistic children.

The results of our cost effectiveness analysis and qualitative process evaluation will be available soon.

We are now in the process of making professional training in the Empower-Autism programme available to interested parties. Please contact kathy.leadbitter@manchester.ac.uk to find out more.