Stressed, depressed, anxious, lonely, embittered and exhausted.
And that’s only the first six things that come to mind.
Stressed, depressed, anxious, lonely, embittered and exhausted.
And that’s only the first six things that come to mind.
(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). 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 this point in my life, as a client of three years with Autismisäätiö, those threats to mental health have been realised. I am 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 has been little or no interest in the causes of the current financial difficulties I am 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 awas 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
(This post was actually another response to someone else’s blog: The Behaviour Analyst. S/he posted about the charges that any BCBA or BCaBA has to charge. I deal with the issue that I myself face as a freelance practitioner in psycho-educational consultancy here in Finland, where the cards are pretty much stacked against the foreigner coming here and trained in any profession that was placed subject to Finland’s protectionist regulatory laws. These laws were enacted in 1994, immediately prior to accession into the European Union. Who says that an open market is that good?)
I’m not a behaviour analyst, and probably never will be. My field is the psychology of teaching, learning and development. But when it comes to what to charge for one’s services… this is probably one of the biggest minefields one encounters in going it alone. I have been a freelancer now for nearly four years, and have not a single clue on what to charge.
The major issue here is that there is a comprehensive education and health system, although I am going to state outright that this does not make these systems necessarily good. And – at least as far as psychology is concerned – it is practically impossible for a person trained outwith the country to get into positions for legalised psychologists. So foreigners with foreign papers have no choice but to either move out of the country or go into private practice as consultants. This means that there is no social insurance institution compensation paid to them per client they see: they have to charge the full fee, and will not see the 75%-of-fee compensation.
This means that – at the point of service dispensation – the client will only have to pay a private-practice legalised psychologist one quarter of that psychologist’s fee. For the private-practice consultant, this means that we have to operate at a fee that will be worth working for, but which will still be competitive with the legalised lot. And this – based on the way the financial aspects of the system work – is practically impossible. The system is set up in such a way that foreign professionals cannot get a realistic share of the private market. Let’s say that a private-practice legalised psychologist can charge 60 euros per hour (which, in Finland, is a 45-minute hour). Of this, on presentation of a KELA card, the client can fill in a form and the psychologist’s legalised status allows him/her an SV-numero (sickness insurance number); and this number, stamped on the form, will reduce that 60 euros to 15 euros (plus a fixed office fee, if s/he operates out of a shared office). The social insurance institution will pay the other 45 euros.
So, even at a service-purchase price of 45 euros per hour, the foreign-born-and-foreign-qualified private-practice consultant is still undercut by a factor of 3 before he or she has opened his/her practice door or even got the shingle hung up!
In this situation, one has to be prepared to specialise very quickly indeed. The health & social care and education systems do not have many specialists in them, and many specialist service providers are now cleaning up. And, in the foundation-type set-ups in which they work, the legal responsibilities are somewhat different from those of their colleagues in the state or municipal services. Would this be a good thing for the foreign professional working in consultancy?
Sadly, the answer is ‘no’. Again, the allowance of the SV number makes it possible for the legalised professional psychologist to charge a fairly high fee for him/herself, with KELA paying the 75% still, whilst the private-practice consultant remains undercut by the same factor of 3, assuming that s/he charges a fee set at 75% of that charged by the legalised psychologist.
I really do not know how a behaviour analyst would fare in this country, and I honestly cannot say how I am going to fare, either. I do not have the luxury of leaving here for a better country with a much more equitable system: I have a child here, and I cannot be expected to abandon her.
I doubt that there are many useful suggestions in my case, but anyone having some ideas is welcome to submit them. Meantime… people in the UK and US who wish to complain about the costs of things like ABA-based teaching for their autistic child… think about what that person has spent on getting prepared to be able to offer you that service, and what they themselves will have to pay out of that fee! And then look at how much they get after those things are paid out… and think about what that leaves them to live on.
And then be grateful that you can get them that cheap!
(The following is basically a response to someone else’s response to a post by a behaviour analyst on the Thinking Person’s Guide To Autism. The post left by Michelle Hecht, MA, BCBA, was a very interesting post and should have awakened more discussion than it did. I suppose that people aren’t thinking about autism so much these days. LizDitz responded with her own take on behaviour analytic ideas, and I set out to provide a similar example of how ubiquitous ABA-type ideas are used in good educational and parental practice. Anyways – my response got too long to post and it has become its own post on my blog. Enjoy!)
Before I got totally into the psychology of teaching and learning, I was a mathematics tutor. Often I’d find students turning up and having serious difficulties with the issue of how to solve linear equations of the form ax+b = cx+d. They couldn’t understand why they couldn’t get these things right, and almost all of them automatically assumed that they weren’t intelligent at all. Rather than try to teach them straight out, I decided to examine what they did.
They would begin by moving things all over the place, without any systematic way of doing it. Why were they doing this? Obviously, to know what to do to help them learn, one has to know why they do what they do. So I asked them.
They’d been told that things moved and signs changed. And they were getting confused. They didn’t get the answers that their teachers at school used to get.
This gave me enough of an idea of what to do: I taught them a formal method, systematic manipulation. Collecting like terms… how to get the terms containing x on one side of the equation and the constants on the other, without moving a thing! I taught them that they would only – in the case of this type of problem – use basic arithmetical operations: add, subtract,, multiply or divide. Simple as that.
I would walk them through a problem: this would involve setting up the problem, and then systematically adding/subtracting/multiplying/dividing … and doing each operation separately. This may be time consuming but it does guarantee that one has a chance of getting a 100% success rate for any test involving this type of problem. I would then set up another, and ask them to tell me what I should do. So I would let them tell me what I should do and, if they had something wrong going on, I could then stop and check with them (and possibly show them what would happen if we went down that wrong road, as it were). The next one, they would get to solve – with me on hand to consult. Then after that, they’d get a handful to solve – and I would oversee the first two or three. This way they could master the technique with someone on hand until they were able to do it, and knew they could do it. And, after doing the remaining problems, and getting them right, they’d get a reward: I’d mark them correct and tell them they’d learned how to solve that sort of problem. And that they were indeed solving the problems on their own!
Leaving out any Vygosktyan/Brunerian concepts of scaffolding and zones of proximal development (and any humanistic concepts such as self-efficacy), the basic processes involved here were:
1- showing the student the nature of the problem, and setting limits on things they can do to solve that sort of problem
2- demonstrating the process of solving the problem, explaining the use of the things being done to solve it
3- letting the student solve other problems of that type, with me on hand to guide, then consult, on how to do it – giving feedback
4- letting the student solve more problems of that type, first overseeing and then leaving alone – and giving feedback at the end of the assignment
Essentially, there’s little difference between this and discrete trial training, in that the student is taken through the process to be learned a little bit at a time and reinforced at every stage. This is a behavioural method of teaching, based on a behavioural analysis of what they were doing that lead to them failing to solve this sort of problem. Sure, as a result of the behavioural analysis, I was able to know what questions to ask, the answers to which were then useful in finding a solution to the problem of them not being able to solve that sort of problem in mathematics. The Vygotskyan/Brunerian and humanistic stuff came as nice side benefits: the main point was the development of a skill set for solving a particular type of problem… self-efficacy is the result of internalisation of the rewarding factors of the learning process.
And nobody had to get slapped across the face for the learning to take place.
Again, no formal training in behaviour analysis. But, as with LizDitz’s situation, assumption that there was a reason why they were doing the wrong things.
I’ve also used behaviour analytic ideas with my daughter, who is Asperger-autistic herself. They work. I was even using them with my nephews and niece when they ‘misbehaved’ (the best one was refusing to pay attention to them until they learned what was wrong about what they did and what they should do instead and that they had to go and apologise – and then, I’d talk to them about what they’d been trying to talk to me about; this is called time out that turns into a negative reinforcement that leads to them behaving ‘appropriately’, which then leads to them getting my attention … the positive reinforcement they desire).
The ABA=doggy-training thing is just a silly way of looking at it (and always has been): humans and dogs have a huge number of things in common, one of which is that they are mammals and another of which is that they have an iron-based oxygen-carrying system as the basis of their blood. Yet another is that they have brains made of the same sort of tissues, and those brains respond to reinforcements in the same way. Sure, it might be more useful and entertaining to dress up the behaviour analytic work in nicer clothes for use on humans, but basically it is being put to work on the same sort of tissue to get the same sort of effect: the learning of something. Above and beyond that, there is no scientific reason to not use behaviour analytic techniques.
Disclaimer: I am not a behaviour analytic psychologist; I am not a behaviour consultant (although I am a behavioural scientist); I am just a guy who trained in applicable psychology and who knows that he has a very wide range of tools with which to work, when his input is needed in some situation.
Some weeks ago, I was involved in a dispute with someone over some physics ideas. This person had said that Einstein’s energy-mass equivalence equation (that wonderful E=mc² thing) is functionally equivalent to the Lorentz transformation.
They are not.
“Why is this?”, I hear you ask. I’m glad you asked. Here’s why:
The Lorentz transformation is a complex set of equations aimed at describing – in mathematical terms – how people in two different inertial frames of reference would encounter the same event when one of these frames is moving. The transformation involves two frames of reference in standard configuration, meaning that the x-axis in a three-dimensional orthogonal set of axes in the stationary frame is aligned with the x-axis of the moving one, whilst the moving frame traverses space along the corresponding axis in the stationary frame.
To demonstrate this sort of thing to yourself, you could stretch out the thumb and the index and middle fingers of your right hand – all at right-angles to one another (which is what orthogonal means) – and (with the remaining fingers curled in, of course,) the arrangement of the fingers shows the arrangement of the axes in an orthogonal system. The index finger represents the x-axis, the middle finger represents the y-axis and the thumb points vertically upward, demonstrating the direction (both the orientation and the sense) of the z-axis. If you imagine an identical copy of that arrangement of fingers suddenly moving off in the direction of increasing x, that is pretty much what a pair of inertial reference frames in standard configuration sort-of looks like. Increasing x is the direction in which the index finger points. So that’s the physical set-up of the axes.
The mathematical bit comes up now. The stationary frame contains the axes x, y and z. The convention for labelling the axes in the moving frame is to use a dash, to differentiate the moving frame’s axes from those in the stationary one. The moving frame moves off at velocity v, and the distance between the respective z-axes (z and z’) increases with time, and the equation in non-Einsteinian relativistic mechanics is:
x’ = x – vt,
in which we are signifying the x-coordinate of the event being seen in these reference frames. As I said, this is not the version used in the Einsteinian version of relativity; this is the Galileian version. The Einsteinian relativistic version includes the Lorentz factor. This is a factor, formulated by Hendrik Lorentz, labelled as γ – or gamma – whose value is determined as being:
γ = 1 / √(1 – v²/c²),
which is one divided by the square-root of the difference between 1 and the quotient of the square of the velocity of the moving frame of reference and the square of the velocity of light. The equation for x’ will come shortly. In Einsteinian relativistic mechanics, with frames in standard configuration, the motion of the moving frame is entirely within the x-axis. This means that y’ = y, and z’ = z. Time in the moving frame is given by the equation t’ = t√(1 – v²/c²). The equation for x’ is this:
x’ = (x – vt)/√(1 – v²/c²).
Together, then, the Lorentz transformation – rather simplified – is as follows:
x’ = (x – vt)/√(1 – v²/c²)
y’ = y
z’ = z
t’ = t√(1 – v²/c²)
As I said, this transformation is aimed at the determination of spatial and temporal coordinates of an event happening in space-time in a frame of reference moving with respect to another frame, which is at rest. The aim of the energy-mass equivalence equation – E=mc² – is to demonstrate the way in which differences in mass can also be seen in terms of differences in rest-mass energy. The sets equations are entirely different, and their aims are correspondingly different. Ergo, the energy-mass equation and the Lorentz transformation are not, never have been and never will be functional equivalents of each other.
(The following, placed here with the agreement and consent of the person about whose situation it was written, is a summary of the work I did in connection with my graduate degree – Master of Education – at the University of Birmingham. I was awarded the degree ‘with distinction’, on 13th December 2006. Because of my prior training in education and applicable psychology, this qualifies me to act as a psycho-educational consultant.)
Reasonable accommodation is that which overcomes structural discrimination, or which compensates for aspects of the teaching/learning environment and/or methods that would ordinarily leave the student at a substantial disadvantage (because, in my capacity as a psycho-educational consultant, I have to define things in terms of educational settings). That is as far as I can come up with a definition without having to rely on specifics.
My thesis deals with the case of a young chap who applied to study for a B. Eng. degree in Energy Technology, hoping to specialise in Environmental Engineering. He is (from the investigative work we have done over the past 18 months) clearly Asperger-autistic (having fulfilled the criteria as operationalised by Gillberg in 1989). In addition, when his responses to the ASDI were cross-referenced to the criteria developed purely for adult diagnosis by Tantam, they matched there also; it was concluded from this – and other psychological testing – that the chap is Asperger-autistic: F84.5 as opposed to F84.
At no point in his application process did this chap get any counselling – either at high-school or at the polytechnic – regarding his rather naive choice of degree for which to study. His leaving certificate profile from high-school did not contain enough background studies in mathematics or physics (8 courses out of something like 50-odd for the ‘lukion päättötodistus’). A reasonably competent educational/occupational psychologist, psycho-educational consultant, careers counsellor or admissions officer would have spotted that.
He passed an entrance examination, which – in Finland – has about as much reliability as a Lappish summer night has darkness. So, the polytechnic let him in, without calling him for an interview. His grades were monitored (as they are required to be when someone is on state student support payments), and yet it took the polytechnic three years to intervene. The intervention: stopping his payments, despite the fact that he was talking to a psycho-educational consultant well-acquainted with educational issues for autistic persons in higher educational settings.
On examination, this chap was found to experience difficulties learning mathematical and physical concepts. He was also found to have difficulties using language (although his colleague in the Green Party, a Communications major with a post teaching academic Finnish at another branch of the polytechnic, had been in a position to help him to improve his academic-linguistic skills to the level where anything he submits to the local newspaper is immediately published). Even so, his mathematical skills let him down, and he has definite dyspraxic issues going on (measured using DTVP-A); his verbal IQ in Finnish is at least 115 but his PIQ suffers from the problems he has either with movement or with planning courses of action and computing consequences of actions.
It was also clear that this chap has a working memory problem: his ability to do mental arithmetic tasks was severely compromised, and – given the emotional sensitivity element to his make-up, coming up in the next paragraph – was severely jeoparised in high-stress situations (even the testing situations proved nerve-wracking for him). A personality assessment showed him to be highly sensitive to his own emotional state and quite adversely influenced by it, as well as not being a very socially-oriented person. His social circles are few and have very subject or topic specific foci, which are centred on his special interests.
There were three points at which interventions should have been conducted during his academic career at the polytechnic. Firstly, his study counsellor at high-school messed up: this person should have questioned him on his choice of course, on the basis of his background studies. Secondly, the admissions officer at the polytechnic should have called him in for interview to ask why he’d chosen that course with the background he had. At any point where it became doubtful that the chap would succeed, the admissions officer should have rejected the application.
Thirdly, the polytechnic – after monitoring his grades for three years – failed to intervene even after the second year’s poor performance, let alone the first year’s. Had there been a study support network in place at the polytechnic, this chap could have been directed there at the end of his first year’s studies to get remedial support for his mathematics skills (during the three years, his failed courses almost entirely were in the fields of mathematics, physics and engineering technology – all highly mathematical courses). The polytechnic’s approach was essentially a way-too-little-way-too-late approach. The polytechnic, in order to get money for having this guy’s bottom on one of its seats, had wasted three years of his life and wasted three years of his study support entitlement… just for him to fail as expected (there is no evidence that the expected – or even wanted – him to succeed).
In his case, reasonable accommodation would have been something like:
1) additional time in examinations (and/or – for maths/science/technology exams – the requisite formulae on a card);
2) printed lecture notes given a few days beforehand, so that he could have built up some idea of what was going to be dealt with… lectures being conducted too fast came up a lot in interview with this chap;
3) separate examination facility, with opportunity to take a break when necessary;
4) opportunity to undertake project-based assignments instead of examinations (or at least to do occasional simulated project-based assignments) as a means by which to provide corrective information about his actual abilities, rather than his abilities under conditions that prove way too stressful for him;
5) other recommendations to be determined after further interview and testing.
I would not expect the polytechnic to allow someone else to do his work for him, and nor would I expect the academic standards to be lowered. But, given the clear discrepancy between what this chap is capable of (in a suitably sympathetic study environment) and how he has performed (in a completely negligent one), it is clear that accommodations at least commensurate with my recommendations above were necessary.
David N. Andrews M. Ed., C. P. S. E.
Psychologist (Teaching, Learning & Development) and Psycho-educational Consultant,
A recent development in Finnish services for autistic people has been the uptake of Facilitated Communication as a primary means of eliciting information from non-verbal autistic people that will be used in making diagnostic and treatment decisions regarding the person whose communication is being facilitated. In this method, the client is supported by physical contact at the hand/wrist, or the arm or the shoulder. This contact enables, so the proponents say, the autistic person to overcome the psycho-motor inertia that is (according to the proponents of this method) the cause of autism. As a person on the autism spectrum myself, I am sure that most people would think that I would be solidly behind this method. But I am in fact solidly against it.
Many studies have been done on this method, focussing on the issue of authorship: the problem of determining who actually came up with what has been written. There are also many studies that belie the notion held be the people who promote the method that autistic communication difficulties arise from a psycho-motor inertia problem. In this article, I shall attempt to deal with these two issues in a relatively easy-to-understand way.
The first issue that I mentioned here is authorship: who is actually coming up with what gets said in Facilitated Communication sessions? And how can you tell for sure who it is?
One of the first proper studies into this matter was conducted by staff at the O. D. Heck Developmental Center in Schenectady, New York. The staff were sure amongst themselves that their adoption of Facilitated Communication was helping their clients to express themselves. They had been trained by the people at Syracuse University, under Douglas Biklen (a major proponent of the method). In the study, which lasted three months, hundreds of trials were conducted with twelve students and nine facilitators. The results were presented at a staff meeting, and these results were astounding.
What did these results tell about Facilitated Communication that was so astounding? Did they support the idea that Facilitated Communication was a good method for use with autistic or other communication-handicapped people?
No. They did not.
This study, now known to be the first objective study of Facilitated Communication ever conducted, demonstrated that the typed output under facilitation was not the work of the clients/students but, rather, was the output of the facilitators themselves. How did they know this?
The study involved an experiment, with the participants being “the most competent producers of facilitated communication in the program(me)”. These participants were shown pictures of familiar objects and asked to name them by typing the name of the object. To control for as many confounding issues as possible, the experimenters used three conditions in the experiment. One was that the facilitators did not know the content of the stimulus picture. The second was that there was no facilitator present to assist with typing. The third was that both client/student and facilitator were shown pictures at the same time but, in this condition, the pictures shown would be the same for both partners in the facilitation session some of the time and different some of the time. In the first and second conditions, there was no sensible output from the clients/students; and, in the third condition, the only correct answers given were typed when the facilitator and client/student saw the same picture.
The team at O. D. Heck D. C. concluded that the facilitators were unwittingly influencing the typed output of the clients/students. But is this possible? Can people influence the typed output of a client/student without even realising it? The answer is, in fact, yes.
A social psychologist at the University of Virginia, Daniel Wegner, proposed a way in with this might happen. According to the theory of ironic processes, the very imperative to not act on thoughts can lead to the person actually acting – entirely unconsciously – on those thoughts. It is known that the training of facilitators includes instructions that urge the facilitator to refrain from acting on thoughts they might have about what the client is trying to type. Under this theory, such an exhortation is in fact a means of setting up the facilitator to fall prey to the effects of ironic processes.
Other experimental studies have demonstrated similar results to those obtained by the O. D. Heck D. C. staff. And the effects of ironic processes, as described by Daniel Wegner, seem to be at the heart of why Facilitated Communication seems to work, but actually doesn’t.
Regarding the basis of autistic communication difficulties being a psycho-motor inertia, similar to that seen in some people diagnosed with cerebral palsy, it has to be said that such a theory flies in the face of the best scientific research conducted into autism over the past fifty years. The difficulties experienced by autistic people are indeed mediated biologically, but not in the psycho-motor domain. These problems arise, rather, in the cognitive domain… the domain of thought, language use, memory formation, working memory use, and understanding of social linguistic conventions. The autistic brain develops differently from the so-called typical person’s brain’s development. Because of differences in development, many autistic people do not join in with many others socially: so an idiosyncratic use of language can arise from this phenomenon. There is a demonstrated propensity for autistic people to be slower than typical people at integrating sensory input from different sources. And, whilst there is indeed research that confirms the existence of motor problems in many autistic people, none of this research demonstrates the effects claimed by the proponents of Facilitated Communication as being the basis for the communication difficulties we see in autism.
So, when I see the hoo-haa about Facilitated Communication, and the promise of being able to unlock “hidden literacy” skills and of “giving voice” to the disabled person by means of this method, I find myself reacting in two ways: one cognitive and one visceral. The cognitive response is that I cannot support a belief in Facilitated Communication as producing output that is in fact authored by the client. The visceral response is that I feel sick.
The claims that Facilitated Communication “unlocks hidden literacy” and “gives a voice” to those with very evident language-based and communication-based disabilities induce nausea in me because these assumptions are wrong entirely (as we have seen earlier, output is basically facilitator-determined) and because – if these assumptions are acted on, and if programmes are modified – the person experiencing serious language/communication disabilities is likely to lose much of his/her existing support without a proper basis in the evidence. And the loss of such supports can only do more damage than would be done if Facilitated Communication were not even tried.
Facilitated Communication has never found validation in rigorous scientific testing, and many professional associations have actually written resolutions against the use of Facilitated Communication. As with any non-validated method of support, Facilitated Communication has no place in the support packages offered to people who cannot express themselves linguistically.
So, as an autistic person who has some documented communication difficulties himself, I am not disposed to accepting Facilitated Communication as a validated method of support for people whose difficulties in communication are worse than mine. And the fact that most professionals in Finland blindly accept this method is indeed very worrying for me: it tells of a total lack of scientific thinking on the part of professionals here (and a corresponding lack of training in scientific thinking in the institutions that train them). Obviously, this situation is not good. For this reason, I became a signatory of the Behaviour Analysis Association of Michigan Resolution on the Use of Facilitated Communication.
In this article, I have left out of the discussion the instances of Facilitated Communication producing output that has lead to the unwarranted splitting up of families on the basis of facilitator-originated accusations of sexual abuse. These matters are for another article I would like to write at a later date, when I deal with forensic aspects of the psychology of teaching, learning and development.
I shall include a comment shortly with a set of references for the points made in this article.
Might be worth pointing out that the FCI is now the Institute on Communication and Inclusion, according to the Syracuse University web-pages.
The Institute also refers to FC these days as Supported Typing. It seems that the term ‘facilitated communication’ is a millstone round its neck.
So here I burst out into the world, with some very not-so random thoughts to share.
Regarding who I am, the following tells you plenty:
I am a psycho-educational consultant. I live in Finland. I trained as a remedial mathematics teacher, before continuing to get a B. A.-equivalence in Applicable Psychology, a Master of Education degree in Special Education (Educational Psychology), and a Certificate of Professional Studies in Education covering a rather new field (Educational & Organisational Psycho-Anthropology/Ethno-Psychology). I have worked on internships in the following organisations since graduating (December, 2006): AutSpect Education Tmi, the Finnish Autism & Asperger Syndrome Association and the South-Eastern Finland Social Psychiatry Association. I have also held the post of Visiting Lecturer (Autism Studies – Psychology) at the University of Birmingham, whilst tutoring/supervising a student of that university who lives and works in Finland, and whilst carrying out a revision of the university’s study materials.
What is a psycho-educational consultant?
A psycho-educational consultant is a person who has studied psychology to Master’s degree level, but – rather than going into a full-blown clinical career in psychology – restricts his/her practice to: psycho-educational assessment and intervention; counselling; consultation; teaching/training and the development of teaching/training materials. The idea seems to be a Canadian one, but it is certainly a very transportable idea and fits within the uniquely Finnish notion that people trained in psychology outside of Finland can only work as self-employed/freelance consultants.
What do I mean by a B. A.-equivalence?
Simply the equivalence in study credit to a Bachelor of Arts degree, which is 360 CATS points (or 180 ECTS points). At the time I transferred from the University of Oulu to the University of Birmingham, I had collected equivalent study credit to that undertaken in a first degree, and I matriculated into Birmingham on the basis of equivalency of prior studies.
What is Educational & Organisational Psycho-Anthropology/Ethno-Psychology?
This is the interface between ethnology/anthropology and psychology in relation to understanding phenomena that exist in groups of people where mind and culture interact. The educational and organisational emphases are just those in which I am interested professionally. Ethnology is the study of societal structures and, in this case, anthropology is the study of the cultures carried and supported by those structures. Psychology is – at its most basic definitional level – the scientific study of behaviour and the effects of thoughts and emotions on behaviour.
What is social psychiatry?
Social psychiatry is an interesting development in the promotion of mental well-being: the unit has no patients, just clients. One of the tenets of social psychiatry is that people have worth as individuals, regardless of any diagnosis that might be applicable in their respective situations. The right to a safe place is paramount; the right to be part of a social group is also paramount, as is the right to something meaningful to do during one’s waking hours. When I was working at the SEFSPA units, I never saw the unit psychiatrist anywhere near the units; this is, arguably, a good thing.
What is this blog about?
Well… the shortest answer to that question is that it is about my thoughts on certain matters within my areas of expertise, based on the scientific training that I have had and the things that interest me. It will include articles on things like autism, specific learning difficulties, testing & assessment, teaching & learning, and other miscellaneous topics of interest to me.