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Autism and activity: keeping it up

22 May 2020

Psychologists Jez Janda and James Smolinski show how increasing physical activity among children with autism spectrum condition can transform the way interventions are delivered in the community.

Physical inactivity is a risk factor for multiple adverse health outcomes, including cardiovascular disease, diabetes, osteoporosis, hypertension and depression (Knight, 2012; Warburton et al, 2006).

In the UK, 77% of boys and 80% of girls aged five to 15 fall below the national physical activity (PA) guidelines of 60 minutes of moderate to vigorous activity per day (NHS Digital, 2019). Given the high prevalence of physical inactivity in the UK, it’s important to consider the effects of a sedentary lifestyle not only on physical health but also on mental health and emotional wellbeing.

Research shows children with an autism spectrum condition (ASC) are even less physically active than their neurotypical peers, and as a result are at increased risk of cardiovascular diseases, metabolic disorders, low self-esteem and depression (Memari et al, 2012; Rimmer et al, 2010; Pan, 2008).

A systematic review on the effects of PA on individuals with ASC reported improvements in behaviour (reduced aggression and self-stimulatory behaviour), academic attainment (increase in task focus) and physical fitness (aerobic fitness, flexibility and strength) (Lang et al, 2010). The literature suggests that increasing PA could be an effective way of improving outcomes.

ASC is characterised by a triad: deficits in social interaction, social imagination and communication. It is also associated with hypo- or hypersensitivity to environmental stimuli and poor motor skills, all of which make it increasingly challenging for children to engage in their communities and in PA.

Behavioural change

Reduced participation in PA is not only due to individual challenges associated with ASC but also the environments in which PA events often take place – people with ASC often have sensory difficulties with noise, lighting and the number of people around them. Parents of children with additional needs report that community participation is hindered as there are more environmental barriers for their children and inadequate service provisions (Bedell et al, 2013; Law et al, 2013). As a result, children with ASC participate less in community-based activities than their peers (Egilson et al, 2017).

The attitudes of others may also influence participation in PA in the community. One of the main challenges identified by parents of children with ASC is the judgement of others on their child’s behaviour and their parenting abilities. These parents value the support of other parents of children with ASC who understand their difficulties and have experienced similar issues (Ludlow et al, 2012).

Addressing the barriers to community participation faced by children with ASC and their parents could be key to supporting a more active lifestyle. The COM-B model (Michie et al, 2011) suggests that behavioural change can be achieved by manipulating three modifiable factors: an individual’s capability (psychological and physical), opportunity (physical and social) and motivation (reflective and automatic). Midlands Psychology’s Keep Achieving service aims to increase community PA participation by increasing capability (awareness of how to be physically active as a family and teaching new skills), opportunity (providing local activities tailored to children with ASC and opportunities to meet other families of children with ASC) and motivation (knowledge that increasing PA has positive physical and mental health and wellbeing benefits).

"Slight modifications to typical sports activities can make them more accessible to children with autism spectrum condition"

The Keep Achieving programme

Keep Achieving delivers 10-week activity programmes that support families whose children have ASC to become more active together. Adopting a systemic approach to increasing PA, Keep Achieving works with the whole family and the local network of community sports and activity providers.

Forty-three families (150 people) from the Staffordshire region that have a child with ASC aged five to 10 registered to participate in the programme. These families were sent a booklet that included the calendar of events and a reward chart where children received a stamp following participation in each event, a positive reinforcement to incentivise regular attendance. Families who registered for the programme were asked to try and attend the majority of events.

Prior to the start of the 10-week programme, parents were asked to state three goals that they wanted to achieve from participation.

The 10-week activity programme consisted of nine weekly events with a one-week break. Events were either semi-structured free-play sessions, swimming sessions or sessions facilitated by a local sports provider.

The semi-structured free-play sessions were run by the Keep Achieving team, two assistant psychologists and the project manager. These sessions were delivered as ‘pick up and play’ sessions, with a range of sporting equipment available. Swimming sessions were free-play splash sessions, and the sessions run by local sports clubs were all sport-specific skill sessions.

After each event, families were invited to complete a feedback form on their experience of the event.

Removing barriers

Economic

All events were free to attend and took place in community spaces in the local area, so finance and distance were not potential barriers to participation.

Environmental

The number of people at each event (before the Covid-19 pandemic) was capped at 30 to try to minimise noise and crowded environments for those individuals with high levels of sensory issues. All activities were planned to be as noise-sensitive as possible by using foam balls and equipment. Noise-cancelling headphones were available at each event if children required them. The majority of events also had a quiet area where activities such as arts and crafts were available.

All events took place in local community spaces, including community centres, sports centres, schools and sports club grounds. This introduced families to local community spaces and allowed them access to spaces they had not been able to before. Children with ASC can find it challenging to go to new places as the environment can be unfamiliar and unpredictable. Allowing these children to access these spaces with Keep Achieving and their families in a safe, supportive environment afforded them new experiences and enabled them to participate in activities they had not been able to previously.

Activities

The time slot for the majority of events was consistent throughout the programme to allow for predictability and regularity for children with ASC. In order to make events more accessible to families, all events were held at weekends so that they would fall outside of most people’s normal working hours.

All activities were designed and adapted to meet the needs of children with ASC. The semi-structured free-play sessions were made up of activities designed to address specific key areas of difficulty related to the autistic triad of impairments. This meant that behind all activities, a main focus of either targeting specific motor skills, encouraging social interaction or providing sensory feedback was present. These activities included obstacle courses, trampolining, volleyball, soft archery, frisbee, glow-in-the-dark activities, hockey, football and crafts.

Minor amendments to certain activities made them more accessible to families to yield a more positive experience of a given sport: for example, using a tennis net for volleyball (lower net height) with an inflatable beach ball that would give the children with ASC and family members more time to hit the ball and a greater surface area to target.

Activities were made social by having different coloured equipment to encourage natural team division: for example, using blue and white hockey sticks and facilitators trying to encourage team play through participation. Sensory activities included trampolining (bouncing), obstacle courses (crawling), and glow-in-the-dark activities such as crafts with glow-in-the-dark paint or obstacle courses with ultraviolet lights. Each event included at least four different activities, the variety intended to keep families engaged.

The sessions run by local sports clubs were all sport-specific and targeted social interactions and motor skills. Keep Achieving worked with a football, handball and rugby club to deliver these sessions. The team delivered training on how to make these sessions more inclusive for children with ASC. The sessions were divided into mini-skills drills followed by a team game. All drills could be adapted to accommodate the skill level of children with ASC and their families.  

Findings

A total of 33 families (113 people) completed the Keep Achieving 10-week activity programme, with 10 families (37 people) dropping out. The mean attendance at each event was 5.2 families (17.2 people). Families attended an average of 6.2 events out of a possible 9 for a mean attendance rate of 68.9%.

Parents had been asked to list three goals that they wanted to achieve from participation in this programme. The most common themes that emerged from 30 parental responses were to spend time together as a family, for their child to socialise with others, and for their child to gain confidence, meet new people, have fun and be active.

After every event, families were encouraged to complete a feedback form to rate the autism-friendliness, family-friendliness, enjoyment and likelihood to return to the event. Each question on the feedback form was rated on a 10-point Likert scale, with 1 indicating ‘not at all’ and 10 indicating ‘very much’ (n = 132).  

 

Conclusion

The consistency of attendance supports the demand for a programme of activities that caters to children with ASC and their families. The nature of ASC can make commitment to a 10-week programme difficult; some children may struggle with changes to routine or the unpredictability of trying new activities or travelling to new locations.

Parents’ goals for participation in the 10-week programme indicated that not all revolved around PA. Parents also valued the socialisation that occurs within a sports and activity setting. For children with ASC who may find it challenging to form and sustain social relationships, parents hoped that attending a 10-week programme where they would be seeing the same families week-on-week would provide opportunities to socialise and help form relationships. The social value of this programme was equally important for parents, who described limited opportunities to socialise with other adults and meet new people due to the demands on their time from having a child with ASC.

Parents highlighted how slight modifications to typical sports environments – such as fewer people, variety of activities, adapted activities – can make community activities more accessible and enjoyable for this population. This supports the COM-B behaviour change model that underpinned the Keep Achieving programme. With 98% of participating families stating they would return to another Keep Achieving event, ASC-friendly activities could be a way of addressing physical inactivity in this population.

Delivering activities in the local community showed families what was on offer in their local area, which could help them to feel more connected to the communities in which they live. Working with local sports clubs allowed families to discover the provisions that are available in their local area and provided them with the opportunity to join as members. Delivering training to sports providers allowed them to feel more confident and capable in delivering sessions to children with ASC, and suggests that sports clubs could become more accessible for a diverse range of people, increasing opportunities for more people to become more physically active.

Some children may struggle with changes to routine or the unpredictability of trying new activities

What next?

Further research in this area could consider measuring the effect PA has on the behavioural challenges associated with children with ASC, such as inattention or self-stimulatory behaviour. PA interventions could be considered as an alternative or addition to traditional behavioural interventions. While this programme did not measure emotional wellbeing, feedback from parents suggests this might be a future area to explore.

To our knowledge, the Keep Achieving programme is the only PA programme for children with ASC in the UK.  

For more information and updates on the service, visit midlandspsychology.co.uk  

Jez Janda and James Smolinski are assistant psychologists at Midlands Psychology CIC.  


References:

Bedell G, Coster W, Law M, Liljenquist K, Kao YC, Teplicky R, Anaby D, Khetani MA. (2013) Community participation, supports, and barriers of school-age children with and without disabilities. Archives of Physical Medicine and Rehabilitation 94(2): 315-23.

Egilson ST, Jakobsdóttir G, Ólafsson K, Leósdóttir T. (2017) Community participation and environment of children with and without autism spectrum disorder: parent perspectives. Scandinavian Journal of Occupational Therapy 24(3): 187-96.

Knight JA. (2012) Physical inactivity: associated diseases and disorders. Annals of Clinical & Laboratory Science 42(3): 320-37.

Lang, R, Koegel, LK, Ashbaugh, K, Regester, A, Ence, W, Smith, W. (2010) Physical exercise and individuals with autism spectrum disorders: a systematic review. Research in Autism Spectrum Disorders 4(4): 565-76.

Law M, Anaby D, Teplicky R, Khetani MA, Coster W, Bedell G. (2013) Participation in the home environment among children and youth with and without disabilities. British Journal of Occupational Therapy 76(2): 58-66.

Ludlow A, Skelly C, Rohleder P. (2012) Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology 17(5): 702-11.

Memari AH, Kordi R, Ziaee V, Mirfazeli FS, Setoodeh MS. (2012) Weight status in Iranian children with autism spectrum disorders: Investigation of underweight, overweight and obesity. Research in Autism Spectrum Disorders 6(1): 234-9.

NHS Digital. (2017) Health survey for England 2016: children’s health. See: files.digital.nhs.uk/01/2E114E/hse2016-child-health-v2.pdf (accessed 30 March 2020).

Michie S, van Stralen MM, West R. (2011) The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implementation Science 6(1): 42.

Pan CY. (2008) Objectively measured physical activity between children with autism spectrum disorders and children without disabilities during inclusive recess settings in Taiwan. Journal of Autism and Developmental Disorders 38(7): 1292-301.

Rimmer JH, Yamaki K, Lowry BD, Wang E, Vogel LC. (2010) Obesity and obesity‐related secondary conditions in adolescents with intellectual/developmental disabilities. Journal of Intellectual Disability Research 54(9): 787-94.

Warburton DE, Nicol CW, Bredin SS. (2006) Health benefits of physical activity: the evidence. Canadian Medical Association Journal 174(6): 801-9.

 

 

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