(This is a revision of a paper that I wrote whilst still the client of a service providing organisation. The paper describes the way that organisation treated me and how that treatment affected me and my life. The person engaged as my support worker was not as qualified in autism issues as I was myself, but she still insisted on her word being law in what she kept trying to pass off to me as our ‘co-operation’. A very edited version of this paper was published in Autismi, the periodical of the Finnish Association for Autism and Asperger Syndrome, in about November 2007. Within days of publication of the article, the organisation dropped me as a client without even informing me of that fact. Unprofessional up until the very end, it seems.)
I am an psychologist (teaching, learning & development), trained in the United Kingdom. I was admitted to the degree of Master of Education in December 2006, after a course of study based on the syllabus for the Diploma in Educational Psychology (the British Psychological Society practitioner qualification current at the time I was matriculated as a postgraduate at the University of Birmingham). I studied in the School of Education under Professor Rita Jordan and Dr. Glenys Jones in the Division of Inclusion, Special Education & Educational Psychology. My specialist area was autistic difficulties in adult life, and this choice was based on my own difficulties as an autistic child who grew up into an autistic adult. My studies make me eligible for Graduate Membership of the British Psychological Society, and this eligibility allows me to use the title “psychologist”.
I was a client of Autismisäätiö since January 2005 and, for three years, they were responsible for providing support services to me. Since they took on my case, Autismisäätiö had never conducted an assessment of my needs and yet the assigned support worker had attempted to provide support without actually knowing what my support needs were (on the basis, mainly, of preconceptions and stereotypes rather than a valid assessment). This led to a breakdown in the relationship between the Autismisäätiö worker and myself, given that it is impossible to provide appropriate support if one has no clue what the client’s support needs actually are. Every properly trained professional knows the drill: assess, plan, act – then evaluate.
Service Provision Issues:
According to Autismisäätiö brochures and web-information, service provision should start with an evaluation phase, leading to a “rehabilitation plan” being drawn up. This plan should contain ideas for support provision in the areas of independent living, study and work. This had not done in my case, so it is impossible to say that appropriate support has ever been provided by Autismisäätiö, purely on the basis of no valid needs evaluation being conducted. I commissioned my own AAPEP assessment by an appropriately qualified autism-specialist psycho-educational consultant, and this consultant made a support plan in the form of recommendations for how the Autismisäätiö worker should with me (including specimen plans for the first few meetings). It was made a condition of Autismisäätiö’s worker being allowed to restart case work with me that she agree to act on the results of this assessment and be bound by the support plan that was based on it. A good intervention requires an assessment of the situation in which the intervention is to be implemented (Sturmey, 1996; Smith Myles & Southwick,1999). Without an assessment, there is a poor chance of success, since there is nothing to aim for (Sturmey, 1996), and assessment should always lead to an intervention (Jones, 2002).
The main emphases of the plan were that “… support should be designed with meaningful employment in mind…”, and that I should be included at all stages of planning my own support system. These were emphasised because I was in my intended final postgraduate year and would need to find work: long-term unemployment was not an option. I did not spend five years as a postgraduate trainee psychologist just to sit around making soup all day. I had also experienced the ignorance of my attempts to be involved in how I should be supported. I had also experienced the imposition of an inappropriate intervention based on no valid assessment, that had been decided on without reference to me, except that I should be coerced into accepting it. Since then, the support worker in question had contacted me with her view and insistence that we would not be looking for a job in order for me to get an income: she insisted on making a negligible amount of money stretch further, despite the common view that getting a job for me would be more supportive and more appropriate. In other words, she insisted on coercing me to her way of thinking. This was not appropriate, and was entirely in opposition to the provision of quality services in the world outside Finland … indeed, it ran counter to Autismisäätiö’s own policy. Was there a discrimination issue going on here against a foreigner?
I found out that the support worker did not know how to conduct a simple needs assessment or progress evaluation (which are part of the training for those with even the most basic qualification in autism work in the United Kingdom). I found this troubling: how would she know what my support needs were, and how would she measure progress in my case? Moreover, it became clear that Autismisäätiö did not have a researched model of support provision in the community: how would the organisation know how support should be provided to people in the community without such a model? These aspects of worker and organisational deficiency did not assure me that I could look forward to a high quality support service. Eventually, the worker-client relationship failed because her practice did not accord with what I knew (from my own training) should be included in appropriate support services.
Despite her having agreed to accept the results of the commissioned assessment and work according to the recommendations given in the support plan, as a condition of being allowed to continue working with me, there had still been problems. It was mentioned in the plan that support should be provided towards having my “work as a professional in the autism field … form my main income”, with no other option being considered until this was fully explored. As at October 2007, this has not happened: indeed, there had been no planning for steps to be taken to get me into a productive work-life until I had to remind the worker myself in September 2007 (after waiting for two years for this to get under way). She was reminded that “securing financial survival” was the top priority task under support from Autismisäätiö, and that this meant having a job in order to earn money.
My attempts to influence the support provided:
Issues that from the start had been of concern to me in how Autismisäätiö were intending to handle my case were the lack of a researched service provision model and a lack of competence in basic assessment and evaluation of needs and progress. For this reason, I had given the worker a copy of a paper reporting a well-researched model of service provision (MacLeod, 1999). I had also loaned her a copy of a course unit on simple assessment and evaluation (Edwards et al, 1995) in order to at least introduce her to the skills and techniques involved. I saw, however, no evidence in her practice that she had assimilated material from the research paper; the same way of working was employed – she would set tasks and I would have to comply, but there would be no room for my comment or input in how my services were provided. Similarly, the course unit on assessment and evaluation remained unheeded; at no stage did the worker ever attempt to get to know – even via an informal self-report assessment – what my actual support needs were, instead seemingly preferring to work on the basis of preconceptions and/or stereotypes rather than the results of a valid assessment. This approach went against what is known outside of Finland as being essential to good practice in autism work: the researched model paper clearly states that a more appropriate model of service would be “… to develop structures of support which would meet the needs of the individuals as stated by them (my italics), rather than attempting to fit them (italics in original) into a service” (MacLeod, 1999: p. 181). Autismisäätiö practice – as implemented in my case – did the opposite.
The impact of this type of approach, where the client is a target of activities in which he has no say, is almost always negative: without his fully informed consent, the activity becomes an imposition that has no legal validity, and so places the service provider at risk of litigation. It also places the client at risk of case mismanagement, mental health problems and inappropriate methods with disastrous consequences (Wheatcroft, 2005). In my case, this is exactly what happened: a Guardianship was forced on me, owing to lack of fully informed consent. Nobody in the Kotka Magistrates’ Office, Kotka Disability Services or Autismisäätiö Kotka Unit has ever offered even an apology, let alone any appropriate form of compensation for the disruption and distress this intervention caused (although, it must be said that the worker herself did apologise, but this was only on a personal level … if anything, it was a non-apology, really). Had the worker bothered to learn the principles of good practice enshrined in MacLeod’s paper, and had she bothered to learn the techniques explained clearly in the course unit on assessment and evaluation, sufficient knowledge of my support needs and progress under support would have been gained to make it clear that the imposition of a Guardianship Order was entirely unnecessary.
In addition to the above materials, I also gave the support worker numerous samples of my work as an psychologist in teaching, learning & development. I did this for two reasons: first, to demonstrate the validity of my claim that I am a competent practitioner-researcher psychologist with specialist qualification in the area in which she was working; and, second, in order that she could inspect them and identify the skills and knowledge-base that I have and thereby gain some idea of what my sellable skills are. That way, she could have acted in an advocate role until a proper job coach could be found to make the more concerted effort on my behalf with prospective employers. My diagnosis is in the public domain, and so it would have been necessary for me to name a support services provider with whom the prospective employer could be in contact to verify the truth of my claims: the support worker’s word (right or wrong) seems to be always taken over that of the client.
Her behavioural response of continuing in the same old way, regardless of the condition imposed on her working on my case again, suggests that she did not take my qualification seriously, and nor did she take seriously the right to be heard and to influence how my support was delivered, seeing instead just the diagnosis and a stereotype upon whom she could visit whatever she liked – without my permission – and call it “support”. Her response to my work: “Yes, David…we know you’re very clever,” and “Very nice, David”. But this was not a matter of being “clever” or doing something “nice”… it was about the demonstration of professional skills and competences.
The same indifference to work samples and the support plan extended also to direct communication of my needs and ideas. The salary I earned as a part-time teacher in a local adult education college had dried up, owing to a drop in enrolments, and my already-low income was yet again reduced to a level that makes it impossible to live on for too many months. Nonetheless, despite my protestations that the money problems I was experiencing were cash flow problems, the worker decided (with absolutely no reference to me) that she would treat them as money management difficulties (despite the fact that there was no objective evidence of such problems even during the time that the Guardianship Order was in force). The consequence was that she attempted to “teach me how to manage on small amounts of money before allowing me to be in charge of larger amounts”: she actually tried to use Maslow’s Hierarchy of Needs theory of motivation to try to convince me that this was how to do it, and so gain compliance with what was another inappropriate intervention imposed on me without my informed consent. As a psychologist, with a superior understanding of Maslow’s theory, I found this attempt rather offensive: it bears up the notion above (that she has no respect for my qualification or my recognised expertise). Moreover, had she fully understood Maslow, she would have realised that the physiological needs at the bottom of the hierarchy – food, heat, shelter, sex, drink (Statt, 1994; Fontana, 1995) – all may or do cost money, which automatically imples that my own idea was in fact a superior one (i. e., that she should support me into getting into a situation where I could use my skills to earn money – fast!). How empathic could she think it was, when she used an ill-considered misapplication of a simplistic version of a theory of motivation for entirely the wrong purpose (i. e., that of securing compliance to an inappropriate intervention)? And how could she reconcile this inappropriate intervention with the main thrust of the support plan: namely, that I should have been supported into work from the beginning of this “second chance” period as my service provider?
Effects of Autismisäätiö involvement on my quality of life:
In the support plan I commissioned, there were three main threats to my mental health identified and listed: loss of independence; loss of self-determination; and loss of ability or opportunity to develop professionally. At that point in my life, as a client of three years with Autismisäätiö, those threats to mental health had been realised. I was then totally dependent on Autismisäätiö for (sadly inadequate) services; I am long-term unemployed, and in difficulties because of the pathetically low levels of Finnish state and municipal financial support (which are impossible to live on without having at least some part-time income); and – without a steady job (or other source of freelance work) – it would be impossible to develop as a professional in my chosen field: autistic difficulties in adult life. A “steady, reliable, effective long-term support system”, required in the support plan, had failed to materialise and the then-current way of working was the same as the old one: crisis management (a horribly ineffective and inefficient way of working), rather than crisis prevention (which is much more effective and efficient). Moreover, there had been little or no interest in the causes of the current financial difficulties I was experiencing – an organisational attitude practically guaranteed to lead to the inferior way of working (Thorpe & Thorpe, 1992, in McNally, 1995).
The support plan also identified three priority areas of activity for achievement under support services: securing financial survival (highest priority, since – if this were not achieved – the lower priority achievements would fail to materialise); securing mental health; and developing household and organisation skills. I was actually further from having secured financial survival in December 2007 than I was when I started with Autismisäätiö, and this was in large part because of the lack of support made available to me to find work. The resultant uncertainty over my future brought about a chronic state of reactive anxiety and depression, and a feeling of utter despair. Unless my support worker were to shape up and work according to internationally recognised principles of good practice in autism work, I could not see much of a future for me whilst ever I was living in Finland.
It is worth revisiting some already-cited research here, regarding the outcomes likely for Asperger-autistic adults whose support needs are not being adequately served. Wheatcroft (2005) delineates the most likely outcomes for such clients as considered by senior managers and commissioners from nine statutory bodies with whom such clients are likely to come into contact. These senior staff returned the following outcomes: inappropriate case management; commissioning of services which do not meet the clients’ needs; development of negative futures; social problems/exclusion; development of challenging behaviours; and increased risk of mental health difficulties (p. 14). Since these have all happened in my life as a result of my support needs not been adequately met, it is clear that I have undergone a reduction in my quality of life.
I am saddened to have to conclude that the standard of support provided to me by Autismisäätiö was unacceptably low. A number of items in the Charter of Rights for Autism Persons have been breached: my right to live an independent and full life to the limit of my potential; the right to be involved in all decisions affecting my future (with my wishes being ascertained and respected); the support services necessary to live a fully productive life with dignity and independence; meaningful employment without discrimination or stereotype; and freedom from abusive treatment and/or neglect (Atkins, Reynolds & Shattock, 2000: pp. 8-10).
The professional practice of my support worker had been based on her taking the dominant role, and had led to a dependence relationship (where I have to adopt the dependent role); and, further, had led to chronic anxiety and distress. It had demonstrated a service philosophy of looking for instant solutions and the “treating of symptoms” (as opposed to looking at things in the long-term, and setting goals); and it had shown little evidence that the worker actually thought about how her choices of action might affect me; and this relationship was imposed on me without my consent (I was not allowed a choice between Autismisäätiö and any other options, so this element of my support provision was left effectively to chance). Indeed, in the current issue of financial difficulties owing to a loss of income and the ensuing cash flow problem, I was given choices in neither the way in which the situation was handled nor the agreed payment dates for bills outstanding: the support worker herself chose these details, entirely without reference to me. These problems reflect a set of organisational values that directly undermine quality of life (Atkins, Reynolds & Shattock, 2000: p. 11), and that is certainly the feeling I got about my life in December 2007, and that I still have now. It is hard to see a service provider acting in such an obviously prejudicial way as engaging in good autism practice.
The ironic thing here is that the worker involved in my case could easily have affected this outcome so greatly purely by engaging in practice that involved listening properly to me, accepting my world-view (instead of imposing her own on me), and working to support me in meeting my needs as I saw them (in line with the Birmingham Community Support Scheme model, in the research paper that I initially gave her). She could have avoided a good many unfortunate situations by acting in a client-centred, needs-based, future-oriented manner. She was made aware early on in the relationship that I am a qualified psychologist (teaching, learning & development) who had specialised in this area of work, and that I had designed courses that have been used and adapted for people working with autistic adults, adolescents and children (including the Newlands Disability Services Foundation and the Central Park VALAS group in Malmi, as well as for Riverdale County Summer University). She was therefore aware of the fact that I was an unusual client in that my professional expertise was in the very area that my own difficulties fall within, which means that I am acutely aware of my own support needs and my own aims for my life, and that I would therefore know what I should be able to expect from a support worker (since I have designed the courses that have been used to train people for that job). As a client, then, I was something of an excellent source of useful practical and theoretical knowledge on autistic adults and the types of support needs we have.
Her most significant error was refusing to acknowledge that expertise that I had (and the obvious resource that I could have been). As the person whose responsibility to was to support me in developing my own future as a productive member of Finnish society, it was very unprofessional of her to ignore the fact that she should have worked for me, rather than for anyone else (regardless of the source of her paycheck). At a meeting between us, where I had been forced to remind her that she had been under commitment to support me into getting work for two years (which commitment she had fallen foul of), I suggested that I could even be able to work as an external consultant for Autismisäätiö. She asked me what I could actually offer the organisation, especially in the Kotka Unit. Given that I have demonstrated skills in psycho-educational assessment & diagnosis; counselling & teaching/training; intervention planning & evaluation; organisational & practice assessment; and organisational & individual consultation, and given that the support given to me as their client has fallen well short of acceptable standards as recognised outside of Finland, I can only conclude that I could offer that organisation far more than it had ever been able to offer me.
Atkins, C., Reynolds, R., & Shattock, P., (2000) Unit 1: Promoting Social, Emotional and Physical Well-being; Intervention, Care and Education course module (Autism – Adults), University of Birmingham, Birmingham
Edwards, G., Evans, G., Jordan, R., Knott, F., Lewis, C., Williams, T., (1995)
Unit 5: Observation, Assessment, Recording and Evaluation; Understanding and Working with the Continuum of Need course module (Autism – Adults), University of Birmingham, Birmingham
Fontana, D., (1995) Psychology for Teachers (3rd Edition)
Jones, G. (2002) Educational Provision for Children with Autism and Asperger Syndrome: meeting their needs
David Fulton Publishing, London
MacLeod, A., (1999) “The Birmingham community support scheme for adults with Asperger syndrome”: autism, Vol 3(2) 177-192 Sage Publications/ The National Autistic Society
McNally, B., (1995) Unit 1(1): Collaborative Working; Understanding and Working with the Continuum of Need course module (Autism – Adults), University of Birmingham, Birmingham
Smith Myles, B., & Southwick, J. (1999) Asperger syndrome and Difficult Moments
Autism Asperger Publishing Co., Shawnee Mission, Ks.
Statt, D. A., (1994) Psychology and the World of Work
Sturmey, P., (1996) Functional Analysis in Clinical Psychology
Wiley & Sons, Chichester
Wheatcroft, D., (2005) “Enhancing services for adults with Asperger syndrome: the perceptions of senior managers and commissioners from adult mental health and learning disability services”: Good Autism Practice, Vol 6(1), British Institute of Learning Disabilities, with University of Birmingham, autism.west midlands and Autism Cymru