Social and Cognitive Readiness of Children and Young Adults on the Autism Spectrum into the Transition to Adults’ Services and Independent Living

The main aim of the initiative is to provide an enhancement programme, to mentally and emotionally prepare young individuals on the autism spectrum for the transition, from children and young people services, to adulthood provision. The programme is based around the three major principals of individuality, curiosity and diversity. It encourages individuals into positive lifestyle related changes and establishment of beneficial positive habits.

The participants build up coping mechanisms, resilience and grit, to optimise life skills assimilation, and their readiness for transition.

The key intention of the intervention is to avoid concentrating on the ‘transition’ outcomes, but to lay the foundations for the initial planning stage (generally beginning from the age of around 14 years old), then elaborate towards the actual transfer (the point at which the responsibility for providing care and support to a young person moves from a children’s to an adults’ provider) and furthermore past the point of transfer.

Specific objectives:

In additional to the main objectives, the programme aims to achieve the following:

• Person-centred approach: always have in mind that “we are all unique”, and all individuals might present different needs hence the key fundamental focuses on centred- person approach; and create an environment of possibilities and personal empowerment. Individuals are encourage to develop higher resilience and grit, by learning coping mechanisms, using individually tailored enhancing physical, academic and emotional wellbeing activities.
• Developing an understanding of the beneficial influence of tailored physical activity programmes, and learning healthier eating habits.
• Enhancing social communication and social interaction using activities blending the concept of empathy, as well as compassion, with cognitive and metacognitive enhancement tasks.
• Reducing repetitive patterns or behaviour, using activities based on the principals of Neuroplasticity (creation of new neuropathways, with aim to ‘overpower’ OCD like pathways).
• Utilising a wide range of activities, resources (material, human etc.) to enlarge an individual interests or occupations, when having personal time.
• Enabling individuals who lack efficiency in gross-motor and fine-motor skills (e.g. eventuality of Dyspraxia), to properly perform movements, through activities bettering back, neck, and hands strength, balance, as well as, nerves ending connections. With view to increase physical readiness for independent life.

Edufit UK programme was initiated to provide a meaningful, accessible and person centred service, utilising physical activity, academic learning, games, topical conversations, as a process to drive in new coping mechanisms transferable between situations.

As an educational consultant who has worked over the last fifteen years in Leicester, a city presented with a number of challenges to include but not limited: a statistically young population, a high proportion of individuals affected by avoidable diseases, lower disposable income, low level of literacy, poor eating habits and a commonness of low level participation into physical activity.

Over the last few years, Leicester has also seen an increased number of children and young adults, diagnosed and referred with depression, mental illnesses and neuro-developmental disorders.

During my interactions with children and young adults identified as being on the autism spectrum, as well as with their parents and support workers, I have encountered many occasions, where individuals faced aspects of social depravation and behavioural issues.

Too often, confusions in regard to eligibility criteria and differing thresholds for childrens' and/or adults’ provision, in specific areas prove to be a challenge. These factors, alongside of the existing framework, mean that flexibility in the provision of a transition plan, is often something which cannot be considered by some of the providers or services.

In my professional capacity, I have observed that although many good practices exist, too few young adults actually are provided with truly individually tailored transition plans. Some providers are still lacking understanding, creativity and sensibility in the proceedings within the pre-transition period’s specifics (e.g. by default increasing anxiety, un-readiness to higher autonomy), as well as the transition itself (e.g. absence of increased resilience, low self-worth, low perceived self-efficiency). Contributing to an absence of flexibility and individualism through the successive phases of the transition.

However, there is a real effort, at the local level, in bettering the transitional process, through the work of the Preparing for Adulthood Partnership and the existence of the Young Advisors Network.

In order to implement the Edufit UK’s enhancement programme, a number of individualised approaches and methods have been used, ranging from cognitive to physical assessment, as well as undertaking metacognitive self-assessment and staff assessment.

The methodologies used are closely correlated to the overarching principles of NICE’s guideline NG43, in relation to ensuring transition support is developmentally appropriate in accordance to each individual needs and differences. One of the key intentions of the intervention is to take into account the participant’s psychological status, social and personal circumstances, cognitive abilities and needs in respect of long-term conditions.

Elevation of participants readiness for transition, enhanced mental, as well as, physical wellbeing, are achieved through a process of deliberate practice, combining differentiated teaching and coaching, self-assessment, with a young adult over an extended period of time.

Following an initial period of familiarisation, aimed at minimising any possible elevation in stress and anxiety, possibly due to the introduction to a new place, new activities, new person, tasks are designed around the individual’s needs and abilities.

While using a flexible approach (especially in regard to the timing and adhesion to particular tasks), the core focus are being pursued (e.g. increasing cognitive and metacognitive skills, increased physical fitness, enhanced mental resilience, creative thinking, build up independence, reinforce positive habits, perceived self-efficiency and self-efficacy).

Daily evaluation is carried to measure the individual’s needs and progress. We concentrate on educating the participants, with an emphasis on the process, rather than the outcomes. This to ensure understanding and higher ownership of new coping mechanisms. We do not focus on skills in isolation, which can erase the interest in any discipline, but instead in inclusion within wider contexts.

We antagonise an appetite for curiosity and discovery, analysing self-perceived failures, developing learning habits from them (based on the principals of symptoms, causes and patterns in epidemiology), and highlighting the elements of success within these self-perceived non-fulfilment, going from one success to the next.

When children and young adults are motivated to learn, they naturally acquire the abilities necessary to do an activity (e.g. taking the bus alone, cooking, reading for factual informations, completing a mentally or physically challenging task). They widen their perception of what they can do and achieve, the perceived mastery of their inner emotions grows as their exploration of the ‘outside world’ expands.

The key element of the Edufit UK methodology is in the humanisation of the process, a sense of genuine empathy and comprehension, paired with experience, knowledge and honesty, enabling the development of self-confidence and perceived self-worth, for the participant.

Generating a higher self-perception of possibilities, often after an extended period of social isolation is maybe the most challenging and rewarding part.

Through the successive stages of Edufit UK programme’s implementation, we have at times, encountered few challenges and barriers, which we had to overcome. In some case we struggled to obtain, from the organisations sending the participants, basic informations regarding academic level, or medical specifics necessary when establishing the initial individually tailored programme.

Some of the participants were extremely introvert, reclusive, and really uncooperative, even refusing all form of communication or interaction. Some parents were reluctant to let their child develop intellectual and physical independence. Few carers appeared themselves to be in some need of intervention, they were exhibiting typical negative behaviours which appeared to not have been dealt with sooner in life. At times the accompanying adults were more a source of disruption than a source of support, through poor understanding of the children they accompanied.

One of the most challenging issues we encountered, was the absence of certain staff awareness and limited understanding of the most recent research and advances in Neurogenism, and learning.

We overcame much of these obstacles by closely cooperating with selected support staff accompanying the participants, linking with other agencies or organisations, and in involving other young participants into the delivery of the sessions (peer coaching). We also engaged more specifically with some of the parents, with view to generate a stronger level of trust and understanding of our methodologies.

Our programme has supported around 50 individuals, perceived as being on the autism spectrum, over the last three years, aged between 6 to 20 years old, with the majority within the 14 to 18 years old bracket. The majority of our participants were introduce to us through specialist professional organisations, but we have also have done a lot of volunteering activities with individuals signed posted to us by word of mouth by either friends, family and/or peers, recognising the unique benefits of our programme.

38/50 participants reintegrated formal education prior to the transition itself, and/or stayed in education following the transition.

All of our participants identified a significant improvement in their physical fitness, with the accompanying repercussions on perceived mental and physical wellbeing.

To monitor the participants progress and to evaluate the results we used a wide range of methods, including data collection, questionnaires, data collection, discussion, to qualitatively and quantitatively assess the various outcomes. We were particularly interested by noticeable enhancement of cognition and metacognition.

All participants improved on their listening, speaking, reading, writing skills. Some even assessing at a reading age two years above the expected number. Participants struggling to answer questions aloud, writing short sentences, or reading a small text, demonstrated greatest improvement. Most ending up doing presentation to an audience, reading large texts for factual informations, writing up to several pages as an response to a topical question. All were able to sustain conversations on their likes, dislikes, opinions and reasons.

38/50 participants demonstrated the establishment of transferable coping mechanisms. While also showing enhancement in life skills, such as being able to buy something in a busy public space, engaging conversation with unfamiliar individuals, taking part in new social activities while in their personal time, developing aspirations for possible professional careers.

Showing a new found courage and increased willingness to confront their fears, and self-doubts. The findings for the remaining twelve participants were inconclusive, each one exhibiting various significant elements of progress, but accompanied by periods of relapse into old negative habits and transition through times of social and unsocial inclination.

• Implement strategies to change limiting beliefs, on self and on the surrounding environment. Create a momentum of curiosity, possibilities and hope.
• Develop individuals coping mechanism, resilience and grit.
• Early intervention. Do not wait for the pre-transition phase (around 14 years old), but instead begin as early as possible with developing life skills and life readiness.
• Introduce the participants to a variety of physical activities, art, acting methods, healthy eating concepts, varied discussion topics, and play games.
• Learn as much as possible about the participants, through interactions, conversations and observations.
• Remember that every child or young adult on the autism spectrum is UNIQUE. Therefore, individually tailored all intervention, and be flexible with the choice and delivery of the tasks, or activities.
• Re-enforce the perception of personal achievement, build self-worth and develop perceived self efficiency/efficacy.
• Have empathy and compassion. Don’t rush your staff recruitment process, ‘good’ support staff are the key element to a successful intervention, and provide them with as much training/personal development opportunities as possible.
• Whenever possible involve the participants’ parents or carers.
• Put as much effort as possible into breaking social isolation. Many children and young adults on the autism spectrum, stay at home in social isolation for long periods of time. Neuro-developmental disorders (e.g. autism) and cognitive impairment can lead to loneliness, loneliness leads to further cognitive impairment.
• Research and use Neuroplasticity/Neurogenism principals and associated methodologies.