Cygnet Mentoring Project: combined experiences from a mentor and a mentee

Volume 1. No. 5

Cygnet Mentoring Project: combined experiences from a mentor and a mentee

 

July 10, 2017

By Susy Ridout, Matthew Edmondson

 

Abstract:

The following paper traces a pilot mentoring project funded by Research Autism and implemented by London South Bank University. First, a background to the project is given before providing an overview of the wider role of mentoring. Next, discussion follows regarding the mentoring role in the specific contexts of both higher education and employment. The article then reviews the role of the mentor within the auspices of the Cygnet Mentoring Project, and the process of their engagement, training and work with the mentee. Following this, the mentee responds by detailing their experiences of the project and reflecting on their progress towards their goals. Finally, there is exploration of the mentor-mentee match, the effectiveness of this mentoring process, and discussion of any gaps or areas for additional research.


 

Cygnet Mentoring Project: combined experiences from a mentor and a mentee

By Susy Ridout, Matthew Edmondson

Background to the Cygnet Mentoring project

Funded by Research Autism, a two-year pilot study was established called the Cygnet Mentoring Project, led and co-ordinated by a research team at London Southbank University (Research Autism, 2015). The aim was to determine the effectiveness of a mentoring scheme, involving autistic adults in its design, delivery and evaluation, in improving the wellbeing of adults with a diagnosis of Asperger syndrome or high functioning autism.

Justification for this project came from two main sources. Firstly, the National Audit Office (NAO, 2009) figures highlighting the inadequacy of effective services for autistic people, resulting in only 12% in full-time paid employment and 70% with additional mental health problems. Secondly, the expressed preference by many autistic people is for individual sessions with a mentor, which offer time-limited, goal-oriented support through well-informed, tailored autism-specific schemes (Research Autism, 2015).

A bespoke training package for mentors of autistic people was designed by an advisory board comprising autistic and non-autistic individuals and practitioners from relevant fields. Training was delivered to a group of around 12 mentors and the latter were subsequently matched with those who had expressed a wish to receive mentoring via this project. Both were recruited through opportunistic sampling.

Purpose of mentoring

Within the field of mentoring there is much debate about its constitution, and how it differs from advocacy, befriending and counselling. Essentially, mentoring concerns itself with looking at the social world of mentees and developing an understanding of the impact of power and knowledge (Miller, 2002, pp25-32). Furthermore, working towards discovering diverse perspectives on a situation can assist a mentee in disrupting the normative in order to obtain different experiences (Western, 2012, p39). Of increasing interest are the conversations around good practice within a coaching/mentoring setting, and concerns evidencing its efficacy (Garvey et al., 2009, In, Western, 2012). This also relates to reflection on the purpose of mentoring, its context, and whether it operates as a coping mechanism or is able to address longer-term goals and ambitions (Western, 2012). It can perhaps be argued that this reflects diversity in mentoring purpose across practice and institutions.

Reflection on the mentoring processes highlights key factors. Firstly, the requirement for establishing boundaries and confidentiality, particularly as many autistic individuals are vulnerable to mental health problems (Tantum and Prestwood, 1999). Secondly, an awareness that autistic narratives are frequently characterised by high levels of anxiety and mental distress due to social barriers to inclusion (Graby, 2015, Moon, 2014, Murray, 2006a), and without support and understanding, these often mask skills and their real lives (Ridout, 2016). Thirdly, psycho-emotional disablism, or the prejudices, negative attitudes, internalised oppression and structural disablism (Reeve, 2015), impacting on autistic individuals contributes to the complexity of experiences brought by the mentee to the mentoring session. Of concern is the inconsistency of support provision for autistic and neurodivergent individuals as reflected in the experiences of autistic students and those endeavouring to access employment (Mills et al., 2010, NAS, 2011).

An understanding of the contextualised experiences that the autistic individual brings to the mentoring session is critical, therefore, in establishing relevant mentoring and a meaningful rapport. As this project was a pilot project providing research data, it was of note that contextualised experiences are under-developed in autism research (Bracher, 2013). Consequently, an opportunity to address this aspect and establish trust and an appreciation of communication preferences underpinned this process. In addition, the project design provided a reflective tool for both mentors and mentees.

Provision of mentoring in two specific areas, Higher Education (HE) and employment is now explored.

Mentoring within Higher Education (HE)

Prior to World Mental Health Day in October 2015, a report by Williams and Pollard (2015) observed that, in comparison to studies of mental health at work, there has been comparatively little attention given to the mental health experienced by students within HE establishments. Furthermore, changes in the Disability Support Allowance (DSA) may have a particularly adverse effect on students with complex needs (IES and REAP, 2015, Lewthwaite, 2014) leading to a focus on mental distress as opposed to one of wellbeing (Fabri et al., 2016, NEF, 2012). Of additional concern, therefore, is the increase in mental health support required, pushing resources to their limit (IES and REAP, 2015, p73).

The changing role descriptors recently circulated to support teams by Student Finance England have only served to confuse matters (SFE, 2016), and these raise serious questions as to the nature and origins of the competencies that are being requested for the roles of both mentors and mental health support workers. In respect of the role of autism mentor, non-medical helpers are asked to have a certificate from the five National Autistic Society (NAS) online training modules. These are multiple choice modules, which can be taken as many times as necessary, and it can be argued that this aspect may allow a lowering of standards in some cases as achievement may be less reflective of competency than an ability to remember.

Other descriptors, which are recognised by SFE include courses with an NAS trainer or validated at HE level or as a PGCE. Critically, none of the competencies address the perspective called for by many autistic activists, namely the need for autistic individuals to inform/deliver training, thereby establishing an insider approach and understanding of support requirements within HE mentoring services (Andrews, 2014b, Beardon et al., 2009, Martin, 2011). Linked to this is the fact that autistic and non-autistic mentors, with personal experience of autism and in some cases with several years expertise, are now unable to practise within HE establishments.

There is also frustration among academic staff regarding the lack of monitoring of the effectiveness of mentoring (IES and REAP, 2015), and guidance for mentoring practice across HE establishments is varied between both mentors and establishments. Embedded in this is debate around the supervision and support of mentors. Supervision is frequently impacted on due to lack of planning of a mentoring service, and Miller (2002, p207) notes a failure of programme managers to uphold their responsibilities if mentors are left without support. This is unsurprising given the increasing demand on support services by students characterised by changing social and institutional demands (IES and REAP, 2015). Improved and effective communication across all departments impacting on the student, or with whom the student comes into contact throughout their studies, would seem pragmatic in the delivery of a seamless mentoring service.

Current Mentoring within Employment

Mentoring within employment, on the other hand, has received more attention (Williams and Pollard, 2015). Nevertheless, employment levels among autistic individuals remain low (Booth, 2016, Edmonds and Beardon, 2008) despite a shift in focus towards neurodiversity perspectives (Baker, 2006, Murray et al., 2005, Walker, 2014). The entire process of employment from focusing and developing skills, to identifying jobs, the application process, the interview and then managing and maintaining an employed status, or re-entering employment after losing a job all bring their individual and overlapping stresses (Booth, 2016). In addition, there is a distinct lack of awareness and training among many employers resulting in autistic employees feeling that they are merely surviving the workplace (Meyerding, 2006, Shore, 2008). A further difficulty is the double empathy problem, or lack of understanding, between the autistic and non-autistic individual, which may arise at any stage of the employment process, resulting in a failure to negotiate barriers to meaningful communication (Milton, 2012).

Understanding autism is critical in the development of strategies to avoid autistic employees being subjected to bullying in the workplace (Autism-Europe, 2014, p33, Booth, 2016). This requires the addressing of a range of issues including discussion about the workplace environment and related sensory and social issues, management of work load and stress and continuing professional development. The subject of bullying goes hand in hand with matters relating to disclosure (Meyerding, 2006, Murray, 2006a), and avoidance of stressors is linked to the application of the Equality Act and its related duties within the workplace (EHRC, 2011, HMSO, 2010). For this reason, it is evident that mentoring concerns knowing individuals within your workforce and knowledge of [specific] contextualised support requirements.

We now discuss the roles of mentor and mentee within this context and the framework of the Cygnet Mentoring Project.

Mentor

I was invited to become involved with the project due to my experiences of neurodivergence and my background, as a mentor supporting individuals on the autism spectrum for many years, and my doctoral research. In addition, my background placed me in a position to offer knowledge and expertise from a range of settings spanning welfare advice, health equality, domestic violence and policy. Experience in terms of keeping detailed records was also crucial; this was a pilot project, and data would be used to inform the research team and could therefore potentially impact on and shape future mentoring provision across a range of settings.

Mentoring provision has highlighted the diverse organisation and delivery of mentoring across a range of settings, particularly universities and employers (Forsythe et al., 2008, Hesmondhalgh, 2006, Miller, 2002). Consequently, individual mentors establish their own formats. Whilst it can be argued that this attends to the support needs of the individual (Croft et al., 2011, SFE, 2016), this lack of a good practice framework can be stressful for autistic people to manage should a mentor change or the mentee enter a new university or job. For this reason, I was keen to explore and learn from a new approach.

This role specified empathic understanding, and in this respect, my positionality was one of standpoint epistemology (Graby, 2012, Stoetzler and Yuval-Davis, 2007). Personal experiences placed me in a position where I was aware of intersectional discrimination and disenfranchisement (Crenshaw, 1991, Yuval-Davis, 2007), and this was an angle frequently overlooked by autism research. Rather, the tendency is to categorise and label autistic individuals solely in terms of their autistic identity (King, 2014, Lawson, 2006, Yergeau, 2010).

The application process asked me to reflect on three reasons for engaging with the Cygnet Mentoring Project as a mentor, and those I provided were as follows:

1. To work to a planned mentoring scheme informed by autistic individuals at all levels

2. To work as part of a team of people where support/supervision is provided to both mentor and mentee

3. To benefit from reflective opportunities

Training Day

Prior to mentoring, a training day introduced mentors to the project, the research lead, research advisors and the advisory board and to each other to discuss the project and its format. This training made no assumptions about a knowledge base or expertise, and each mentor was valued equally. The day comprised a well-balanced mix of presentations and discussions around the history of autism and its perception from an autistic perspective (Milton and Simms, 2015). The informality of presentations welcomed input from all without dismissing the voice of anyone present, and as a sharing of knowledge, skills and experiences, it provided an excellent opportunity for reflection and debate.

Early debate focused on the Social Model of Disability, the Interest Model of Autism or monotropism (Murray et al., 2005), and a review of the Personal Wellbeing Index (PWI) (Cummins, 2013), the Salmon Line (Butt, 2007) and the SPELL framework (NAS, 1964). This was complimented by key talks from autistic individuals covering topics frequently raised by autistic individuals, researchers and practitioners including sensory perceptions, stress and anxiety and autism and gender (Milton and Simms, 2015).

Scheduling provided opportunity to work in both pairs and small groups. In groups, there was exploration of the difference between: mentoring, advocacy, befriending and counselling, with each group being tasked with the definition of one of these before reporting back to the whole group for a wider debate. In addition, the impact of the distinct models of disability were discussed using case studies, and further presentations covered issues such as mental wellbeing, communication and empathy. The importance of contextualisation was debated, as this assists in the understanding of experiences and barriers to success, and has a key role in progression towards established goals. The day ended with a focus on the SPELL (structure, positive, empathy, low arousal, links) framework for mentors (NAS, 1964), discussions around identity and disclosure, boundaries, confidentiality and risk, the mentoring session format and recording of sessions and maintaining contact with the research assistants (Milton and Simms, 2015).

Introduction to mentee

Following an introduction by email, I contacted the mentee to arrange an initial session, and the mentee expressed a preference for a Skype session due to geographical distance as well as communication preference in this context. Whilst communication preferences should be noted due to their influence on meaningful communication, these are also influenced by context and may not always be static. Consequently, this naturally led to wider debate around barriers to communication experienced by the mentee.

Provision of limited information about the mentee permitted them to share any information about themselves that they wished before discussion of their mentoring goals. This was important, as disclosing information is an emotionally charged issue which is constantly encountered by autistic and disabled people (Graby, 2012, Murray, 2006a). Therefore, this format located the mentee as the insider expert from the outset.

Opening sessions can be tricky to navigate, so the provision of two options provided a less threatening approach by asking the mentee if: a) they wished me to take the lead and say a little about the project and myself, or b) for them to introduce themselves first. The mentee chose the former, and I said a little about my involvement with the research project and my connection to autism. My impression was that this start to our sessions encouraged more open, transparent conversation from the outset and established opportunities for dialogue with some common areas of interest. With our matching, I felt research assistants had paid careful attention.

Setting and working towards goals

Garvey et al. (2009) have the limiting nature of the rigid setting of goals by closing options. For this reason, during the first session, we discussed the setting of three flexible goals where the mentee required support. This was led by the mentee, but with the mentor introducing discussion regarding the most helpful way of phrasing these. This enabled identifiable activities to be set towards achievements. Progress was marked along a Salmon Line (Butt, 2007).

Sessions occurred weekly for an hour or twice weekly for two 30-minute periods as preferred. This flexibility assisted the maintenance of focused sessions, and allowed for improved processing of information and engagement with suggested activities towards achieving goals. A mentoring meeting record sheet provided space for completion of: a brief summary of matters discussed; actions to be completed by either the mentor or the mentee for the next session; and details of any queries or concerns to discuss with the research assistants.

This framework assisted in the shaping of each session, with opportunity for the mentee to talk about matters that had arisen during the week and time to review activities set the previous week. The mentoring framework encouraged acknowledgement of the unpredictability of life and unexpected events requiring attention - these sometimes acted as barriers to progressing goals (ARGH and HUG, 2011). Furthermore, expression of an unpredictable event was not always unrelated to goals set, and it is the mentors role to assist the mentee in thinking through different ways to address the matter. Therefore, discussion often centered on ways to prioritise and deal with these events.

Progress was assisted by weekly activities, and discussion of these was critical in determining whether these had been helpful or problematic. Those activities that were useful led to the mentor and mentee discussing what would be useful as a next step towards the goal and the identification of activities for the mentor as required, for example researching information.

If the activity had been problematic, discussion focused around issues such as: whether the activity set was in itself not helpful; whether it was not broken down sufficiently; or whether in the context of that particular week it was unmanageable. A key part in tackling frustrations and anxieties is maintaining a positive focus and keeping progress, or lack of it, contextualised (Bracher, 2013). For example, just because lifes challenges happen, does not signify that inability to do an activity one week signifies complete failure. Many [autistic] adults in particular have not been encouraged within the education system to be creative, with mistakes considered to be catastrophic (Robinson, 2006). Advice and guidance about forming different perspectives on a matter can be an important feature of the mentoring process, and together with constructive feedback, this informed our sessions (Barnes and Mercer, 2013, Bloxall and Beresford, 2013, Graby, 2015).

General debate around autism/neurodivergence (Robertson, 2010), language and terminology (Fairclough, 2009), identity, diagnosis (Murray, 2006a), autistic communities, conferences, websites and literature (Arnold, 2012, Autscape, 2013, NAS and Ask Autism, 2014, Wrong Planet, 2004) were among the many interesting and thought-provoking conversations that were woven into our sessions. They arose naturally in discussions relating to: the mentees interests; barriers faced; experiences past and present and seeking to inform a positive and progressive future, where he was valued, had his skills recognised, and was able to contribute to a society that embraced diversity. Among topics covered as integral to the development of self-confidence, were strategies for dealing with change and transition, managing challenges with social and personal interactions and exploring effective ways to familiarise oneself with new environments, such as those involving study or work, and related procedures. These inevitably linked to future possibilities, and this was dealt with by employing a stepped approach to each life goal.

A key feature of inclusion is self-esteem and being able to voice ones personal identity without an outsider categorising who we are, as this is a constant challenge faced by autistics/neurodivergents (Giles, 2013). The ebb and flow of our discussions often touched on the notion of the correct language to use in order to activate group membership regarding the identity of autistic. This was because fear of using incorrect terms can be a contributory factor in the silencing of many autistic individuals or those who feel that they just dont fit (Murray, 2006b), and is a very real issue. This resulted in many fascinating and thought-provoking conversations around the impact of this, exploring how an awareness of and access to autistic communities and spaces can be instrumental in facilitating expression of fluid identities.

Often introduction of a particular problem required exploration of a range of perspectives in order to reach a resolution. These were always contextualised and matched with possible consequences of choices made. This type of process aims to avoid the over-generalisation of problem-solution strategies and recognises that the decontextualisation of events by anybody, autistic or non-autistic, can result in the development of an over-generalisation approach to problem-solving. In the long term, this may lead to inaccurate or even irrelevant responses as situations are misunderstood or misinterpreted (Ridout, 2016).

Tackling anxiety is often addressed well through the introduction of more flexible, less rigid processes and the acknowledgement of the diverse responses of an individual to situations. Consequently, the role of imagination in challenging rigid or stuck thought patterns is essential to tackling the stories of now and then (Andrews, 2014a) and developing new perspectives. As one of the goals established became a lesser priority than another, this goal was set aside and another set that addressed the mentees more pressing priorities at that time. This flexibility to working enabled us to keep a focus on a relevant agenda, which acknowledged and addressed daily stressors.

Reflective journal - mentor

Following each session, mentors completed a reflective journal with space for reflection to encourage a more considered emotional response to the session and identification of learning points. I found this extremely useful as a tool for linking my input into these sessions and developing different perspectives on a situation. Perhaps what emerged more prominently than in other mentoring experiences was a sense of being overwhelmed by the conflict between barriers to achievement, desire to achieve, and an extraordinary skill set and knowledge on the part of the mentee.

Support for mentors was a key factor in this pilot project, although this required more allocation of time and resources. The supervision meeting following three months was run as a discursive session to exchange ideas and experiences and identify fresh avenues for future development. Numerous suggestions were proposed, and the requirement for mentor support was highlighted by all.

Final outcome

Several sessions before the end, I informed the mentee of the number of remaining sessions and, having checked with one of the research assistants beforehand, I suggested that the mentee might want to consider shorter 30 minutes sessions to make the ending more manageable. Consequently, some sessions were divided to continue the mentoring over a slightly longer period of time.

The final session comprised a final review of the goals and achievements. This was effective in highlighting that despite the ups and downs of life experiences, noticeable progress had been made towards each goal and steps were identified towards continuing in this manner.

Mentee

This part of the paper was written through discussion between the mentee and the mentor.

Introduction to the project

I was delighted to be invited to participate as it seemed like an opportunity to both learn about autism and to participate in autistic led research.

Being matched with a mentor and introductions

I was aware that this project was led by an autistic academic and this significantly reduced my potential anxiety. I generally do not feel anxious about talking to new people, however, when engaging with a new service I am often apprehensive for several reasons. I worry about being judged, dominated, not listened to or that they will be unable or unwilling to meet me outside of normal social conversational parameters. This is because I sometimes think and speak fast or use cultural references as conversational shorthand.

So when a member of the research team asked for information to assist with the mentor matching process, because it was autistic led I felt able to be frank and asked for someone who 'could keep up with me'. To my surprise this request was not met with judgement, and I was pleased to be immediately told that they had someone in mind, who might be suitable to work with me. Having been accepted at that point was a relief since I then knew that playing the how long can I maintain the appearance of Neuro-Typicality game would not be necessary in this instance.

Another factor in my positive anticipation for this research was having recently had 6 months of business coaching. This had familiarised me with setting and tracking goals, and through this I developed an appreciation of the value of working within a regular reflective coaching framework. However, this process alone had not enabled me to continue paying for coaching.

Previous experiences of support

I have been unhappy since childhood, which led to being (mis)diagnosed at the age of 17 with 'bipolar affective disorder'. Five years ago I was diagnosed with textbook ADHD and suffered from the effects of taking prescribed ritalin for two years, which included increased suicidal ideation.

Although my experiences in life had begun to make more sense through the lens of an ADHD diagnosis, as I read more literature I began to deconstruct the diagnostic system. Later I began to wonder whether identifying with a 'less severe' and 'pallatible' 'ADHD' diagnosis would limit my potential progress towards a full self awareness, in other words, I became aware that the outcome of my journey would depend on my diagnosis (Kennedy et al,. 2011). After a protracted campaign I was referred to the Regional Autistic Diagnostic Service who promptly confirmed my suspicion with an official stamp of Aspergers.

I had always approached therapies and support with an expectation for some kind of catharsis. Unfortunately, not one of my many support experiences had been satisfactory. On reflection I now feel that I was trapped within the dominant paradigm of 'disease' and was holding a core identity of being 'broken', difficult or dysfunctional.

Through participation in a pioneering Mad Studies course (Queen Margarets University, 2014), I developed a different perspective of the mental health paradigm and was empowered to change my relationship with care providers.

Whilst it is usual for service providers to keep their notes and communications private (subject to inaccessible data protection processes), all of the data that my mentor recorded about me was shared with me shortly after each session. Evidence that this project met my desire for support with a balance of power is therefore evidenced by how my notes were kept and shared by the mentor.

Actually meeting the mentor

Skype was used due to its low barrier of entry for both parties this remained the main communication tool, supported by email, SMS and occasional telephone call.

I really appreciated being able to contact my mentor between sessions through a variety of channels. Most of the time I was able to maintain the

boundary of having direct contact only within the arranged session. However, it was very comforting to know that I would be able to make contact if need be. This knowledge provided a safety net that encouraged me to be more self reliant. I was perhaps too respectful of this boundary, because there were times when I probably should have contacted my mentor but did not.

What was helpful was being able to send my mentor messages using the chat function of Skype. I used this to make notes of things I wished to discuss. It was good because it could be used without the requirement or expectation of necessarily receiving a timely response. These communication options helped make the experience much more flexible, human and warmer than any other kind of previous support. The ongoing chat helped me to hold the thread of our conversation in mind between sessions, so in this way coming to the session was less jarring, and I was better prepared.

Planning goals

I found the process of setting goals challenging and intense because it was hard to know where to start, and prioritising goals was difficult. With some guidance, my first goal became an easy yet considered choice, and then the rest became easier. In working toward the goals it was sometimes tricky to positively evaluate my progress - it often felt slow, halted or even negative. Whilst velocity did vary, in review it was encouraging to realise that a significant amount of progress had been made in all areas by using the Salmon line (Butt, 2007).

The flexibility to change my third goal was a useful approach that enabled me to pivot in reaction to circumstances. This flexibility contributed to feeling in control of the process and was another example of how the project was empowering rather than rigid and dominant.

Goal 1 Improving personal health

Whilst writing this, I realise shame led to me generalising my goal and that Improving Personal Health though smoking cessation, appropriate eating and exercising habitually would be more accurate. During the project, I monitored my weight and girth. Broken into smaller activities this involved purchasing scales and setting up a tracking system. I aimed to record measurements on a daily basis, or at least a minimum frequency of once per week.

Observing results through mentoring emphasized a cyclic pattern of comfort eating, weight gain and low self-regard. Although I had enjoyed relatively long periods of feeling and behaving positively, there were other periods of low self and physical regard, with the result that after six months my weight was similar to at the start. However, this mentoring helped me recognise a sea change in how I felt when I was not smoking.

Goal 2 - Updating computer system to include a task list

The writing and prioritising of lists at the beginning and end of the week was a particularly useful activity. Utilising modern technology, I wished to carry my calendar with me and to have alarms to remind myself to prepare for and keep appointments. I wished to learn and develop a technical tool (Emacs) to support this, and thus set this as my goal. Unfortunately progress towards this goal slowed halfway through the mentoring program because I began an intense programme of study.

I found that reviewing what I had done since the previous meeting against our agreed tasks extremely useful. This preparation involved reflection and reviewing and it would leave me feeling better. I was able to enumerate what I had achieved and it helped me refocus on my agreed goals.

Goal 3 - Develop autism literature reading habit

This project enabled me to discuss autistic language in more depth; specifically we discussed terms and how they are used, and their power or ability to limit understanding or self esteem. Learning this language seemed like a vital key to participation (Autscape, 2015). This process is enjoyable, rewarding and I feel that this goal has been achieved.

Whilst discussions throughout mentoring continued to introduce literature to engage me with different perspectives and autistic activists, I found it necessary to establish a different third goal to address a new agenda.

Goal 3 (reset) - Access the employment market

I began this goal by setting up a crowd funding campaign (Edmondson, 2016) in order to attend a programme of (CodeClan, 2016). By working with my mentor on voicing support requirements from a perspective of someone who processes things differently as opposed to a paradigm of deficit was very helpful. This helped me express my requirements for the first time in a work or training situation.

Through this process I anticipated being accepted. This process was very powerful, but went unappreciated by course staff, who had their own normalised ideas of difference and disability. Thus, although able to listen to my ideas of this, they had their own frame of reference within which they worked. This left me frustrated and disempowered, because I felt that I was not taken as the expert in my own experience, and the professional that was contracted to deliver the staff autism training (from which I was excluded) was more listened to than I was. It was very helpful to have access to my mentor, and I was disappointed that the organisation was unwilling to work with her, as this would have provided me with some continuity and assurance that the organisation was working with someone who understood me.

Improving Self-Regard

My self-regard was improved through experiential validation that came about through talking to my mentor and through acknowledgment of activity achievement. I found that exploration and vocalisation of that which I had disregarded or diminished or was simply unaware of, an emotive experience.

My mentor helped me to put these into a context which related to the literature by autistic writers (Arnold, 2012, Graby, 2012, 2015, Milton and Moon, 2012). The experience of realising that I was not alone, and finding pioneers that had trodden a similar path, was so profound that I cried. Through this process I was introduced to a common neurodivergent language and gained new perspectives.

I valued the mentoring framework because it provided the opportunity for effective remedial work by positive re-evaluation of childhood formative detrimental experiences. Thus, where I had initially felt broken, with the encouragement of my mentor I was then able to accept, identify and subsequently explore these experiences.

The mentoring framework facilitated the building of trust and support, for example I found that I was accepted even when I was overwhelmed and had 'given up'. This was very helpful and led to me beginning to recognise when I had become overwhelmed and then to accept myself during those times. It was empowering to discover that it is acceptable to set boundaries and actively take control of my environment, to decide what to expose myself to, and to begin to identify when I am becoming overwhelmed or overloaded. Before this, I was unlikely to notice when I was beginning to become overwhelmed and would therefore make social faux pax or miscommunicate, with the result of feeling bad about myself. In general, through the mentoring because I was never judged as being bad during times when I was not coping, my self-esteem was raised and my confidence was boosted. The feelings of being overwhelmed passed faster and became less intense; I was able to return to addressing my goals in less time, and to build resilience and determination.

In addition, there was flexibility for the few times that I forgot to cancel sessions. Initially I was crippled with guilt when this happened, partly because I had so much respect for my mentor, but also because I valued the sessions so highly. As with the times that I was overwhelmed I found that my mentor was consistently sensitive and gentle, and she helped me to accept this as part of lifes unpredictability. I was never blamed or judged badly and found that I fell into depression less frequently. Also, the depression was less deep, and I developed the confidence to be flexible.

When we changed the format from 1 hour to two 30 minute periods per week, I found this helpful as I frequently did not have capacity for a whole session. This flexible, pragmatic approach enabled me to check in with my mentor at a later stage in the week and increased the sense of support.

Being able to talk about difficult situations with a trusted person is helpful in learning to avoid the self-blame engendered by the 'deficit' model of disability. Regularly reflecting on and discussing aspects of daily life and well-being within a framework or context of goals enabled me to not consider myself to necessarily be at fault. I was encouraged to seek alternative perspectives and this really helped build my self-esteem.

Final outcome

Weekly activities, preparations for sessions and the discussions themselves helped me keep on track with progress by maintaining an eye on the bigger picture. I have either met goals or made significant progression towards them. This has been an extraordinary year: I have exceeded my expectations in many things and achieved beyond the goals set whilst dealing with a most difficult change in personal circumstances. By the end of the process, I had two job offers relating to my skills and qualifications.

With more mentoring, I can see the progress continuing. I am certain that I have would have benefited from this type of mentoring in my early teenage years and that this would have had a dramatically positive effect on my life outcomes. I estimate that there is an optimal amount of mentoring which lies between 3-6 months, with 1-2 months off before being repeated. This would affect a balance between avoiding developing a dependency on the support and yet ensuring that regular available support is available. In addition, there is a tension between habituation and appreciation, such that the mentoring retains vibrancy and is not taken for granted. I would strongly recommend this mentoring approach to others.

Summary

Within the auspices of a structured pilot project designed and delivered by autistic/neurodivergent individuals, this case study points to the fact that focused mentoring for a short time can be effective in addressing set goals. Having a skilled facilitator in terms of matching the mentor and mentee is critical to the success of the process. For that we are particularly grateful to the project researchers.

As mentioned by both mentor and mentee, there is a need to be flexible in terms of times and communication channels. As a tool, the Salmon Line was an effective marker against which to monitor and discuss progress, any related problems or new issues to be addressed. The delivery of training to all mentors on an equal basis and the establishing of a support system were critical aspects of this project. However, the latter requires further input in the future in terms of resources.

Another area for further exploration concerns the accessing of training by mentees who wish, and have the capacity, to take on the role of mentor. In line with the view proposed by many autistics, it is preferable to be mentored by someone from the same community, and who has had similar experiences. This is an area that requires careful discussion.

Two more identified gaps that potentially require further research relate to later reflection on: the process and outcomes of the mentoring; and the development of a streamlined accessible data management and journaling tool.

Finally, both mentee and mentor considered this project to be a success. Its timely introduction considering changes within HE and the wider political changes in the UK mean that it has a critical contribution to make towards refocusing the autism agenda towards that expressed by autistic individuals themselves. This would allow recognition of skills and attributes of individuals and work towards inclusion at all levels within our society.

References

Andrews, M. (2014a) Narrative Imagination and Everyday Life. Oxford: Oxford University Press.

Andrews, P. (2014b) Autistic participation in widening access to higher education. Participation and inclusion from the inside out: seeing autism from an autistic perspective. London, NAS and Ask Autism.

ARGH and HUG (2011) Autism and Mental Health: the views of people on the autistic spectrum on their mental health needs and mental health services. Inverness, ARGH (Autistic Rights Group Highland) and HUG (Action for Mental Health).

Arnold, L. (2012) Autism, its relationship to science and to people with the condition. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1: (1).

Autism-Europe (2014) Autism and Work: together we can. Brussels: Autism-Europe.

Autscape (2013) Concept: What is Autscape? [online]. http://www.autscape.org/about/concept Cambridge The Autscape Organisation [Accessed 3.10.2014 2014]

Autscape (2015) Exploring Autistic Space [online]. http://www.autscape.org/2015/AutscapeInfo%2015.2-programme.pdf North Yorkshire Autscape [Accessed 27.8. 2016]

Baker, D.L. (2006) Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability and Society, 21: (1): 15-29.

Barnes, C. and Mercer, G. (2013) Exploring Disability. 2nd.Cambridge: Polity Press.

Beardon, L., Martin, N. and Woolsey, I. (2009) 'What do students with Asperger syndrome or high functioning autism want at college and university? (in their own words).' Good Autism Practice, 10: (2): 35-43.

Bloxall, K. and Beresford, P. (2013) Service User Research in Social Work and Disability Studies in the United Kingdom. Disability and Society, 28: (5): 587-600.

Booth, J. (2016) Autism Equality in the Workplace. London: Jessica Kingsley Publishers.

Bracher, M.J. (2013) Living without a diagnosis formations of pre-diagnostic identity in the lives of AS people diagnosed in adulthood. PhD, Southampton.

Butt, T. (2007) Personal Construct Theory and Method: another look at laddering. Persona; Construct Theory and Practice, 4: 11-14.

CodeClan (2016) Get ready to create| code [online]. https://codeclan.com/ Edinburgh CodeClan [Accessed 2016]

Crenshaw, K. (1991) Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color. Stanford Law Review, 43: (6): 1241-1299.

Croft, S., Bewley, C., Beresford, P., et al. (2011) Person-Centred Support: a guide to person-centred working for practitioners. London, Shaping Our Lives, The Joseph Rowntree Foundation.

Cummins, R.A. (2013) Personal Wellbeing Index - Adult (PWI-A). In Group, I.W. (Ed.) 5th ed. Melbourne, Australian Centre on Quality of Life, Deakin University.

Edmonds, G. and Beardon, L. (2008) Asperger syndrome and employment: adults speak out about Asperger syndrome. London: Jessica Kingsley Publishers.

Edmondson, M. (2016) Help Matthew Learn to Code! [online]. https://www.gofundme.com/x8k2j658 Gofundme [Accessed 15.3 2016]

EHRC (2011) Public Sector Equality Duty. In EHRC (Ed.) London, Equality and Human Rights Commission (EHRC).

Fabri, M., Andrews, P.C.S. and Pukki, H. (2016) Best practice for professionals supporting autistic students within or outside HE institutions. In Programme, L.L. (Ed.).

Fairclough, N. (ed.) (2009) A dialectical-relational approach to clinical discourse analysis in social research, London: Sage Publications Ltd.

Forsythe, L., Rahim, N. and Bell, L. (2008) Benefits and employment support schemes to meet the needs of people with an Autistic Spectrum Disorder. In Office, N.A. (Ed.) London, NAO.

Garvey, B., Stokes, P. and Megginson, D. (2009) Coaching and Mentoring: Theory and Practice. London: Sage.

Giles, D.C. (2013) 'DSM-V is taking away our identity': The reaction of the online community to the proposed changes in the diagnosis of Asperger's disorder. Health, 0: (0): 1-17.

Glover, R.A. (2003) No More Mr Nice Guy: a proven plan for getting what you want in love, sex and life. Pennsylvania: Running Press Book Publishers.

Graby, S. (2012) To be or not to be disabled: autism, disablement and identity politics. Theorising Normalcy and the Mundane. Chester.

Graby, S. (2015) Neurodiversity. In Spandler, H.;Anderson, J. & Sapey, B. (Eds.) Madness, distress and the politics of disablement. Bristol, Policy Press.

Hesmondhalgh, M. (2006) Autism, Access and Inclusion on the Front Line: Confessions of an autism anorak. London: Jessica Kingsley Publishers.

HMSO (2010) The Equality Act. London, The Stationary Office Ltd.

IES and REAP (2015) Understanding provision for students with mental health problems and intensive support needs. In (IES), I.f.E.S. & Researching Equity, A.a.P.R. (Eds.) Brighton, Higher Education Funding Council for England (HEFCE).

CodeClan (2016) Get ready to create| code [online]. https://codeclan.com/ Edinburgh CodeClan [Accessed 2016]

Edmondson, M. (2016) Help Matthew Learn to Code! [online]. https://www.gofundme.com/x8k2j658 Gofundme [Accessed 15.3 2016]

King, R. (2014) How autism freed me to be myself [online]. http://www.ted.com/talks/rosie_king_how_autism_freed_me_to_be_myself?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=Feed%3A+TEDTalks_video+%28TEDTalks+Main+%28SD%29+-+Site%29#t-75960 TEDMED [Accessed 24.11. 2014]

Lawson, W. (2006) Coming out, various. In Murray, D. (Ed.) Coming Out Asperger: diagnosis, disclosure and self-confidence. London, Jessica Kingsley Publishers.

Lewthwaite, S. (2014) Cuts to grant funding for disabled students will put their studies at risk The Guardian. London, Higher Education Network. Scotland: Queen Margarets University,Edinburgh.

Mad Peoples History and Identity (2014) Scotland

Martin, N. (2011) Promoting inclusive practice for PhD students near completion. Journal of Inclusive Practice in Further and Higher Education, 3: (2): 37-52

Meyerding, J. (2006) Coming out autistic at work. In Murray, D. (Ed.) Coming Out Asperger: diagnosis, disclosure and self-esteem. London, Jessica Kingsley Publishers.

Miller, A. (2002) Mentoring students and young people: a handbook of effective practice. Oxon: Routledge.

Mills, R., NAS, Research Autism, et al. (2010) Access to social care and support for adults with autistic spectrum conditions (ASC). London, SCIE.

Milton, D. (2012) On the ontological status of autism: the double empathy problem Disability and Society, 27: (6): 883-887.

Milton, D. and Moon, L. (2012) The Normalisation Agenda and the Psycho-emotional Disablement of Autistic People. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1: (1).

Milton, D. and Simms, T. (2015) The Research Autism Cygnet Mentoring Pilot Project: Mentor Training Day. In Research Autism & University, L.S.B. (Eds.) London South Bank University, London South Bank University.

Moon, L. (2014) Under the Gaze: Fishbowling, Commodification and Lenses. Theorising Autism. Centre for Research in Autism and Education.

Murray, D. (ed.) (2006a) Coming out Asperger: diagnosis, disclosure and self-confidence, London: Jessica Kingsley Publishers.

Murray, D. (2006b) One that got away. In Murray, D. (Ed.) Coming Out Asperger: diagnosis, disclosure and self-confidence. London, Jessica Kingsley Publishers.

Murray, D., Lesser, M. and Lawson, W. (2005) Attention, monotropism and the diagnostic criteria for autism. Autism, 9: (2): 139-156.

NAO (2009) Supporting people with autism through adulthood. London, NAO (National Audit Office).

NAS (1964) SPELL (Structure, positive, empathy, low arousal, links) [online]. http://www.autism.org.uk/about/strategies/spell.aspx London NAS [Accessed 19.6.2016 2016]

NAS (2011) Untapped Talent: A guide to employing people with Autism. London, DWP.

NAS and Ask Autism (2014) Participation and inclusion from the inside out: seeing autism from an autistic perspective London NAS, Ask Autism

NEF (2012) Economics as if people and the planet really mattered. London, NEF (the New Economics Foundation).

Reeve, D. (2015) Psycho-emotional disablism in the lives of people experiencing mental distress. In Spandler, H.;Anderson, J. & Sapey, B. (Eds.) Madness, distress and the politics of disablement. Bristol, Policy Press.

Research Autism (2015) Cygnet Project: Mentoring Scheme for Young People with Autism Spectrum Conditions [online]. http://researchautism.net/cygnet-project London Research Autism [Accessed

Ridout, S. (2016) Narrating experience: the advantage of using mixed expressive media to bring autistic voices to the fore in discourse around their support requirements. Doctoral thesis, University of Birmingham.

Robertson, S.M. (2010) Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges. Disability Studies Quarterly 30 [Accessed

Robinson, S.K. (2006) Do Schools Kill Creativity? [online]. www.youtube.com/watch?v=iG9CE55wbtY TED talks [Accessed

SFE (2016) Non-Medical Help Services Reference Manual. In SFE (Ed.) London, Student Finance England.

Shore, S. (2008) Survival In The Workplace [online]. http://www.asperger.it/?q=node/144 [Accessed 10th July 2013]

Stoetzler, M. and Yuval-Davis, N. (2007) Standpoint theory, situated knowledge and the situated imagination. Feminist Theory, 3: (3): 315-333.

Tantum, D. and Prestwood, S. (1999) A Mind of One's Own: a guide to the special difficulties and needs of the more able person with autism or Asperger syndrome. London, NAS (The National Autistic Society).

Walker, N. (2014) Neurodiversity: some basic terms and definitions. Neurocosmopolitansim: Nick Walker's notes on neurodiversity, autism and cognitive liberty. California, USA, Nick Walker.

Western, S. (2012) Coaching and mentoring: a critical text. London: Sage Publications Ltd.

Williams, M. and Pollard, E. (2015) Universities and student mental health: how are universities coping with soaring demand? [online]. http://www.employment-studies.co.uk/news/universities-and-student-mental-health-how-are-universities-coping-soaring-demand Brighton Institute for Employment Studies [Accessed 27.6.2016 2016]

Wrong Planet (2004) WrongPlanet.net [online]. http://www.wrongplanet.net/ [Accessed 25th April 2013 2013]

Yergeau, M. (2010) Circle Wars: Reshaping the Typical Autism Essay. Disability Studies Quarterly.

Yuval-Davis, N. (2007) Intersectionality, Citizenship and Contemporary Politics of Belonging. Critical Review of International Social and Political Philosophy, 10: (4): 561-574.

 

 

 

Refbacks

  • There are currently no refbacks.


Creative Commons License
This work is licensed under a Creative Commons Attribution 3.0 License.