A research trial for parents of children recently diagnosed with autism spectrum disorder
What is the REACH-ASD Trial?
The REACH-ASD Trial is a trial looking at how effective a new group-based programme for parents of children recently diagnosed with Autism Spectrum Disorder (ASD) is. The programme, called EMPOWER-Autism, aims to help parents in the period following their child’s ASD diagnosis.
Data collection for the REACH-ASD trial is now complete.
What is the EMPOWER-Autism programme?
EMPOWER-Autism aims to support parents following their child’s ASD diagnosis by offering:
- evidence-based information about ASD and the experiences of being autistic
- understanding the effects of autism on communication, sensory experiences, emotional regulation, and behaviour
- strategies to support parents in dealing with the effects of autism
- information to help understand the education system and other support systems
- time and space for parents to gently reflect upon their feelings about their child’s diagnosis and their experience of being a parent
- psychological strategies (based on Acceptance and Commitment Therapy) to support adjustment and to deal with stress and worries.
The programme consists of five weekly group sessions which last for three hours.
How was the EMPOWER-Autism therapy developed?
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 ASD diagnosis.
How did the REACH-ASD trial work?
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 recently received a diagnosis of autism.
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 are now analysing whether there are any differences in outcomes between these two groups.
Why is this project important?
Autism spectrum disorder (ASD) is a neurodevelopmental condition affecting over 1% of UK children. Parental responses to the diagnosis are varied. Some parents feel relieved that their child’s needs have been formally recognised and understood. Other parents describe worry, shock or sadness. 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 and it also means it is hard to know whether it is effective. Most support programmes for parents of newly diagnosed children do not directly address parent’s own adjustment and wellbeing. Parental mental health is important in its own right, but also because it is linked to the wellbeing of the whole family and the child with ASD. Post-diagnosis support which offers high-quality and empowering information about ASD and addresses parental mental health and adjustment could therefore bring benefits to the parent and whole family.
There is a real need for a programme of post-diagnostic support for parents that is supported by evidence. This support will equip parents with the tools to:
- better understand autism in their child
- support their child’s development and wellbeing
- advocate for their child’s needs
- process their own feelings and response to the diagnosis
- look after themselves in the face of any challenges that arise.
If EMPOWER-ASD is shown to be effective, it will fill a key gap in the provision of effective ASD interventions from diagnosis onwards.
How to make a referral
Recruitment has now finished for the REACH Trial
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