{"id":1670,"date":"2024-12-16T10:31:39","date_gmt":"2024-12-16T10:31:39","guid":{"rendered":"https:\/\/sites.manchester.ac.uk\/autism-at-manchester\/?p=1670"},"modified":"2024-12-16T10:32:06","modified_gmt":"2024-12-16T10:32:06","slug":"parent-focus-group-favours-early-neurodevelopmental-pathway-for-under-2s","status":"publish","type":"post","link":"https:\/\/sites.manchester.ac.uk\/autism-at-manchester\/2024\/12\/16\/parent-focus-group-favours-early-neurodevelopmental-pathway-for-under-2s\/","title":{"rendered":"Parent focus group favours early neurodevelopmental pathway for under 2s"},"content":{"rendered":"

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Parent focus group favours early neurodevelopmental pathway for under 2s.<\/h2>\n

Blog written by Susanna Vosper, Liz McNeillie and Emily Hoare, members of the <\/em><\/strong>IBASIS<\/em><\/strong><\/a> therapy team<\/em><\/strong><\/p>\n

A neurodevelopmental pathway for under twos, launched last year in Stockport, celebrates it’s one year anniversary this month.\u00a0 Designed to support families of neurodivergent babies pre-diagnosis\u00a0using a needs-led approach, the pathway is now also being implemented in Bury.<\/p>\n

An observational tool called SACS-R, currently referred to as MoSAIC (Monitoring of Social Attention Interaction and Communication) is carried out by health visitors to identify babies showing signs of neurodivergence.\u00a0 The babies and their families are then offered an early communication programme called IBASIS, delivered by specially trained practitioners.<\/p>\n

The programme supports parents to better understand their babies using video feedback and shared discussion with the iBASIS practitioner, often in their own homes. The evidence base shows that babies become stronger communicators when parents and carers can recognise, understand and respond to their baby\u2019s communication signals. These changes last across time (Green et al, 2017; Whitehouse et al, 2019).<\/p>\n

Following participation in the programme, children presenting as neurodivergent join the neurodevelopmental\u00a0pathway, accessing a range of multi-disciplinary support and assessment services where appropriate.<\/p>\n

Our team carried out focus group sessions with five parents of neurodivergent children, some of whom identified as neurodivergent themselves.\u00a0 They shared their views of the new pathway and previous healthcare experiences.\u00a0 Most of these parents had not experienced the new pathway themselves. All parent and carers\u2019 names have been changed.<\/p>\n

Previous Healthcare Experiences<\/h3>\n

An overarching theme which emerged was the importance of the child being central to their experience, feeling comfortable and respected for who they are. Parents wanted knowledgeable professionals who were able to have open and honest conversations about autism, using neuro-affirmative language. They wanted to feel listened to, heard and seen. There was shared frustration about previous healthcare experiences with delays and long waiting times for appropriate support, assessments and diagnosis. Disjointed services had resulted in children not receiving appropriate and timely care.<\/p>\n

SACS-R<\/h3>\n

This observational tool enables identification of babies who are likely to be neurodivergent from as early as 11 months. Infants identified are offered access to iBASIS as part of the pre-diagnostic neurodevelopmental pathway. \u00a0Parents were introduced to the SACS-R in the focus group and shared their views.<\/p>\n

Parents welcomed that the SACS-R enabled earlier identification of neurodivergent infants and enabling access to support. They noted that it created the opportunity for earlier, open conversations with parents.<\/p>\n

iBASIS<\/h3>\n

Parents with and without direct experience of the iBASIS programme were supportive of the approach. Parents felt it was important that it fed into a wider neurodevelopmental pathway where children and families would be offered ongoing support and assessment.<\/p>\n

Parents especially appreciated being treated as experts in their child, recognition of their child\u2019s unique communication style, emphasis on the parent-child relationship and being able to have open, positive conversations about their child.<\/p>\n

One parent had come across a discussion about iBASIS on a parents’ forum where a concern was shared that iBASIS may delay or prevent a diagnosis.\u00a0 She emphasised the importance of parents understanding how iBASIS links to the wider\u00a0neurodevelopmental pathway and will lead to an assessment if required.<\/p>\n

Views of parents who have experienced the new neurodevelopmental pathway<\/h3>\n

In a coproduction meeting earlier this year, opinions were gathered of five parents who had experienced iBASIS and the new pathway.<\/p>\n

These parents were happy that they could receive support early, before age two. Parents felt iBASIS helped them to better understand their child as well as supporting their child\u2019s communication and relationship with their child. They felt this empowered them to help their children. They were pleased that following iBASIS, their child would be followed up with the SACS-R in a further 6-9 months.<\/p>\n

\u201ciBASIS helped me focus on what I could see was happening with my child. It helped me see things from a different angle.\u00a0 It\u2019s beautiful.\u00a0 It\u2019s a good idea\u201d\u00a0<\/em><\/p>\n

\u201cIt\u2019s given me the power to know how to continue helping my child.\u201d\u00a0<\/em><\/p>\n

\u201cI\u2019d say to other parents – Do it \u2013 you\u2019ll be fascinated!<\/em><\/p>\n

In summary, parents were impressed by the prospect of a proactive, pre-diagnostic pathway for neurodivergent infants, offering early identification and support from as early as 11 months. This was true both of parents who had direct experience of the pathway and those who were introduced to it in the focus group.\u00a0 The views of these parents have informed the language used by practitioners involved in the pathway and materials shared with families, as well as the design of the pathway going forward, for example, changing the review point post iBASIS based on parent views.<\/p>\n

References<\/h3>\n

Green, J., Pickles, A., Pasco, G., Bedford, R., Wan, M. W., Elsabbagh, M., … & McNally, J. (2017). Randomised trial of a parent\u2010mediated intervention for infants at high risk for autism: Longitudinal outcomes to age 3 years.\u00a0Journal of Child Psychology and Psychiatry<\/em>,\u00a058<\/em>(12), 1330-1340.https:\/\/doi.org\/10.1111\/jcpp.12728<\/a><\/p>\n

Whitehouse, A. J., Varcin, K. J., Alvares, G. A., Barbaro, J., Bent, C., Boutrus, M., … & Hudry, K. (2019). Pre-emptive intervention versus treatment as usual for infants showing early behavioural risk signs of autism spectrum disorder: a single-blind, randomised controlled trial.\u00a0The Lancet Child & Adolescent Health<\/em>,\u00a03<\/em>(9), 605-615.<\/p>\n

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