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SIT-REP – 23 Feb 2018

So – the situation just now.

1- After nearly twenty years of local authority refusal to assess for – and draw up – a disability support plan, a meeting was held at my house in which the point was made that my life has evolved into a mess because of the lack of an adequate support plan; and, in the first half-year after this meeting, I am still waiting for the process fo start.

The very people whose job includes helping the client to write the application for this assessment and plan are the very social workers who are refusing to even consider that such an assessment is necessary – despite the fact that my disability rating went from 40% on entry to Finland to the current 60% after 19 years of this abuse.

2- After two and a half years of battling with my GPs, I got an assessment and diagnosis for heart failure, not otherwise specified. My GPs had refused to refer because of normal CXR, even though my heart was in clinically-observable cardiomegaly in the first CXR), ECG and BNP result. The problem here is this: the GPs inquestion are Finnish and lack the continued education that is required for registration maintenance in the UK. Had they had this sort of education, they would know the following: that the BNP test is very non-specific, and is not therefore useful for ruling out HF; that the BNP test needs three BMI groups in order to have any screening utility, since there are three cut-off levels necessary for three BMI groups (lean people – 165 units; over-weight people – 100 units; obese people – 54; all of these cut-offs give a sensitivity of 0.90 and a specificity of 0.70 – a sensitivity of 0.90 means that the test will give a correct positive result nine times out of ten positive results but a specificity of 0.70 means that the same test will give an incorrect negative result three times in every ten negative results … not very good as a test, really). My BMI is 44 and I had BNP test results in the 70s and 80s. These are all above the 54 units cut-off below which one can rule out systolic hear failure.

3- My previously mild/sub-clinical OCD has, because of the 19yr stress package that is Finland’s health & social welfare, employment services and education systems, become moderate to the point where it now needs a diagnosis. Thankfully, the psychiatrist at the hospital understood the situation well. The hospital stuff and the public health care stuff are not run by the same people: public health care is under the control of local authorities.

4- There is no fourth item just yet. Going to publish this now, and edit when I have time.

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My worst university horror stories are – surprise, surprise – Finland-based.

Don’t get me wrong – in the UK, when I lived there, the lack of all appropriate diagnoses in childhood fucked me over for a full-time place at university. But, at least back then, it was possible to go to university half-time, get disabled student allowances on a pro-rata basis, and study for a degree part time whilst on benefits at any local university. Bit different now, but there is still that paragon of educational socialism, the Open University, which provides a marvellous educational opportunity for people like me to get an education par excellence as non-traditional students. I am a UK citizen.

(But … fuck you, Finland!)

After working my fucking arse off for years, in 2001, I got a place at the University of Birmingham to study for a M. Ed., which I chose to study based tightly on the then-current practitioner qualification in educational psycholgy – the British Psychological Society’s Diploma in Educational Psychology. Everything in my M. Ed. is mapped spectacularly well onto the currriculum for the Dip. Ed. Psychol., and this can be demonstrated well.

In 2006, having studied two qualifications over a period of five years (with a disability rating at that time of 40%), I came away with a Master of Education degree that was awarded ‘with Distinction’. So, you’d think that this would be acceptable to a university anywhere in the EU, because of the Bologna Treaty on the recognition of qualifications within the EU, right?

(Well – fuck you, Finland, for signing and ratifying and then ignoring this treaty.)

So, having achieved high distinction in my degree, I inquired (didn’t even apply yet!) about doctoral studies in the psychology of education at the University of Jyväskylä, here in Finland. I read carefully the university psychology department’s project description and planned my proposal (per the university’s guidelines), with a view to going doctoral on ‘motivated learning, learning difficulties and later educational transitions’. My main research question was:

“How can Finnish Higher Education Institutions be modified to better include Asperger-autistic students and thereby facilitate the inclusion of such students into wider society after graduation via entry into work-life?”

I aimed to answer this by investigating the answers to the following questions, each of which would result in a publilshed paper:

1- What issues that lead to learning difficulties are faced by Asperger-autistic students in higher education settings in Finland? What factors combine to give rise to these issues, and how are they explained by traditional or current Finnish expertise?

2- For those issues that lead to the experience of learning difficulty, what has been offered to compensate and/or remediate for such difficulties? What has been the dominant paradigm (as seen from the occupational psychological perspective) in working with such students? Is it FPJ¹ (FSI²) or FJP (FIS)?

3- When such remediations/compensations have been implemented for the Asperger-autistic student, what has been the outcome for such students? Has the intervention been useful or has it made matters worse? Either way, how?

4- What, if any, sorts of intervention would have better served the interests of Asperger-autistic students in pursuance of their desired academic qualifications and, ultimately, their work-life outcomes?

¹ Fitting Person to Job or vice versa
² Fitting Student to Institution or vice versa

What I will say now, because it was the basis for this line of research, is that Finnish HEIs are pretty shite at dealing with making accommodations for students with specific learning/developmental difficulties. I found this out by experience and practitioner research over the eight years I’d been living in Finland by this time, and had lectured on the topic in 2005 at the University of Tampere (“Accessibility, equality and effective support measures – a focus on ways in which Higher Education Institutions can support Asperger-autistic students in learning and assessment settings.”). Students in schools at all levels who had specific learning or developmental difficulties were routinely shoved into the special education ‘dustbin’ class-room where nothing was expected and nothing got done. In total, five-ninths of my work for my M. Ed. dealt with this particular matter. Yep, I did a taught master’s degree entirely by original research. Go me.

You’d think that this would be a good background for getting to go doctoral, right? Well … I sent my inquiry to the relevant professor, just to see if a supervisor could be found (here, you have to find the supervisor before you start your application … and now I know why: it makes it practically impossible for non-Finnish-citizen students to get into Finnish universities to research for post-graduate degrees).

I emailed this professor at 8pm that evening, with a study profile, and copies of my psychological testing level, and my degree certificate – as well as the 5-page proposal required by the university, to show that I was capable and interested enough to want to go through with this. By 8.45pm, I had a response. In this response, he:

a- got my fucking name wrong;
b- got the name of the syndrome wrong;
c- demonstrated clearly that he hadn’t fucking read my proposal by stating that I should ‘try some medical faculty’!

He managed to commit these three fuck-ups inside two sentences and a fucking salutation.

And the worst of this is that he was the one (out of a number of professors in different universities) who wrote back: the ones at Helsinki didn’t even do that!

I’ve been here for nearly two decades and there’s more where this came from, going from public health care (e. g., having to fight with GPs for 2½yrs to get an assessment for – and dx – of heart failure) to social services (e. g., fighting for nearly two decades to get a proper support plan and STILL any support beyond what everybody gets still being entirely on a discretionary basis).

Can anybody spell ‘client abuse’? And – given the attitudes of HEIs here towards foreigners (I’m by no means the only foreigner who’s experienced this shite) – is it any wonder this shit goes on?

Click link:
https://psychtld.wordpress.com/2013/03/03/current-situation-as-at-3rd-march-2013/

 

 

I am fucking raging.
This bollocksing about costs people their fucking lives, and there’s nobody in government taking steps to stop this shit.
Read this article:
http://www.seattletimes.com/seattle-news/teens-death-hastened-by-practitioner-who-had-bogus-diplomas/

Anybody notice this?:
—–
Meanwhile, the alternative-medicine schools that are accredited by the federal government are dismayed by the explosion of untrained and uncertified operators.

“They are using smoke and mirrors to confuse people by not disclosing the truth behind their accrediting agencies and their institutions,” said Dr. Jane Guiltinan, a naturopathic clinical professor at Seattle’s Bastyr University, one of the five schools of naturopathy that are accredited by a federally recognized institution.

Guiltinan is president of the American Association of Naturopathic Physicians (AANP), an organization that requires that its members graduate from a four-year accredited college.

“To argue that you don’t have to have any training for diagnosing or treating patients is absurd,” she said.
—–

Isn’t that just fucking bullshitters calling bullshitters ‘bullshitters’ because they’re not peddling bullshit using a diploma bought from an accredited diploma mill rather than one of the ordinary ones?! Fucking absurd as fuck, that is.

No wonder the public has its fucking hands full trying to tell what’s bollocks and what isn’t.

And here’s the fucking thing that gets me all fucking stabby just now:

It really doesn’t matter whether someone took a four-year bachelor degree before training as a pissing naturopath… except that, if it was a degree in science, some fucking bellend spent time and money doing a degree that they were going to use as bog roll before studying for a fucking fake degree – in a fake fucking subject – that deserves to be used for wiping the shit off an angry arse.

There’s absolutely fuck-all difference between the AANP and ANMA … regional board accreditation means fucking nothing for the validity of any of the treatments that get used by these twatbastards … because it’s ALL naturopathy and it’s ALL fucking bollocks.

If the AANP were THAT fucking bothered about validity for anything, it should be focussed on the treatments themselves. Not on whether someone’s in AANP or not. They should started teaching the proper principles of evidence/science-based medicine. That way, at the end of a four-year ‘doctoral’ ‘degree’ course, what ‘graduates’ would come away realising would be this:

1- I just spent two years of my life learning a bunch of useless fucking horse-shite.
2- I then spent another two fucking years doing a research project in controlled practice, only to find out that what I learned in the first two years of this fucking programme was utter fucking horse-shite.
3- I’ve just spent tens of thousands of dollars on this fucking programme and I’m left in a fucking position of STILL not knowing what I can do to fucking help anybody.
4- It’s time that places like Bastyr University got burned to the fucking ground, along with all the bollocks they fucking teach.

It’s NOT ‘alternative medicine’: it’s alternatives to medicine and it’s ALL fucking bollocks. And it’s costing people their fucking lives – and not a single fucking politician in government is doing a fucking thing about it anymore. Health freedom, my fucking fat, hairy, Scottish arse. Freedom to die a fucking unnecessary death, more like.

I have so much of an issue with the whole AS v. ‘classic’/Kanner autism thing. Mostly because the people using the distinction tend to be parents who for some reason are rejecting what is properly understood in the science about what Asperger syndrome actually is.

The only proper way to understand it is using set theory. Without a good grounding in that, everybody is at a high risk of getting it totally wrong.

Let A = {all humans}
Let B = {all humans who are on the autism spectrum}
Let C = {all humans on the autism spectrum diagnosable with Asperger syndrome}
Let D = {all humans on the autism spectrum diagnosable with autism}

We shall see that the union of sets C and D is a proper subset on set B, which is a proper subset on A: C ∪ D ⊆ B, and B ⊆ A.

Those sets further to the left are included in those sets further to the right.

Now it’s going to get confusing: the DSM IV criteria for Asperger syndrome required that – in order to diagnose Asperger syndrome – the diagnostician could not better explain what was going on with the examinee using the criteria for ‘autistic disorder’. So, in order to diagnose 299.80, one had to exclude 299.00 (in ICD 10 terms, one had to exclude F84.0 before one could diagnose F84.5)

This is problematic, and here is why: in DSM IV and DSM IV-TR, the criteria for 299.80 were themselves a proper subset on the criteria for 299.00; in other words, the very act of diagnosing Asperger syndrome was also an act of diagnosing autism — purely because of this set relation of 299.80 ⊆ 299.00! Because F84.5 ⊆ F84.0, the same phenomenon presents for the case of ICD 10. In either case, diagnosing Asperger syndrome will necessarily be diagnosing autism. And, because the criteria for Asperger syndrome in both systems were proper subsets on those for autism generally, it was (and still is, for ICD 10) impossible to reject the less specific diagnosis of 299.00/F84.0 in favour of 299.80/F84.5  – meaning that Asperger syndrome is a diagnostic impossibility.

Sally Ozonoff and her colleagues assessed the children in Asperger’s study according to the criterion sets 299.00 and 299.80, and found that 299.80 could not be diagnosed; the children were diagnosable under 299.00 only. As I understand it, a similar situation comes about under ICD 10 with F84.5 versus F84.0 (I’d need to find that reference again, though, in order to be completely sure).

Now – back to the set theory stuff. Are sets C and D truly different sets of people? Based on the above diagnostic issue, you’d probably think not; since 299.80 and F84.5 are proper subsets respectively on 299.00 and F84.5, the Asperger diagnoses are de facto autism diagnoses. Set C is, in fact, a subset on set D; but it is a null (empty) set, since Asperger syndrome cannot be diagnosed without the examinee also fulfilling the criteria for being autistic generally.

TL:DR – the names Kanner and Asperger mean nothing: it is ALL autism.

My first blog article for a long time, and this is something I feel extremely passionate about – and my language here tends to reflect that. It goes a bit Billy Connolly – Stephen Fry.

Hmmm …. Well, I’m not sure.

What I would say is this – that autistic people can become experts on autism, but we’re not experts purely because we’re autistic. Expertise is more than just being autistic or dyslexic or whatever. There’s serious marshalling of skills involved in developing expertise. Wasn’t until I started my studies that I found this out…. how little I actually understood compared to what I understand now.

As for autistic people being the ONLY experts on autism – fuck, no.

That’s just fucking arrogant and potentially Dunning-Krugerish. If someone diagnosed with cancer said ‘Well, I have this cancer so I am the only sort of person who could be called an expert’, we’d look at them and think ‘Fuck off!’.

I’m autistic. I’m also a psychologist who has specialised in autism issues across the life span. Before I started my studies, was I any sort of expert on autism, purely by virtue of being autistic? Fuck no. When I finished my B. A. Sc.-equivalence – was I an expert then, purely by virtue of being autistic? Again, no. Did my studies help? A bit. What about having gone through postgraduate training? Am I an expert on autism? Someone thinks so – I’m an associate editor for a journal dealing with autism practice. Does my being autistic make me that expert? Yet again – not a chance. Does my training make me an expert? Well, it gives me some level of expertise, but I don’t bloody feel like I’m an expert. I feel less of an expert NOW than I ever felt before I started my studies. At this point, I should refer people to Dunning & Kruger and their paper: https://www.ncbi.nlm.nih.gov/pubmed/10626367

—–
J Pers Soc Psychol. 1999 Dec;77(6):1121-34.
Unskilled and unaware of it: how difficulties in recognizing one’s own incompetence lead to inflated self-assessments.
Kruger J!, Dunning D.

¹ Department of Psychology, Cornell University, Ithaca, New York 14853-7601, USA.

Abstract-
People tend to hold overly favorable views of their abilities in many social and intellectual domains. The authors suggest that this overestimation occurs, in part, because people who are unskilled in these domains suffer a dual burden: Not only do these people reach erroneous conclusions and make unfortunate choices, but their incompetence robs them of the metacognitive ability to realize it. Across 4 studies, the authors found that participants scoring in the bottom quartile on tests of humor, grammar, and logic grossly overestimated their test performance and ability. Although their test scores put them in the 12th percentile, they estimated themselves to be in the 62nd. Several analyses linked this miscalibration to deficits in metacognitive skill, or the capacity to distinguish accuracy from error. Paradoxically, improving the skills of participants, and thus increasing their metacognitive competence, helped them recognize the limitations of their abilities.
—–
There is nothing about being autistic that protects any of us on the spectrum from metacognitive deficits – indeed, there is sound research that shows that we, too, are as prone to this problem as non-autistics – maybe even more prone. This doesn’t mean that we’re inferior: it just means that we are bloody human, too. Whilst ever we are, outwith any educational interventions, prone to metacognitive deficits in the same way as non-autistic people are … we cannot seriously expect (nor should we!) to be taken seriously when we make stupid statements like “the only autism experts are autistic people”. Because – given what ‘expert’ means – we are not ever going to be experts without having any bloody education or training that helps us to put our experiences into some kind of proper epistemological framework.

Know who else says “We’re the only experts because of our experiences”? Antivaccinationists.

And we know how ‘credible’ _they_ are.

No. We are not experts ‘purely by experience’; and we are not the only experts on autism. And, whilst ever any of us go around making that sort of statement, nobody is ever going to take us seriously. I cannot in all honesty get behind that sort of crass statement.

Stressed, depressed, anxious, lonely, embittered and exhausted.

And that’s only the first six things that come to mind.

EDIT:

As of Wednesday 17th September, 2014 …. the situation is no better. If anything, it is worse.

It is with a very heavy heart that I write this post. Sometimes, another’s situation goes unstable and ends up in something rather disastrous for them, and then we end up – for any number of reasons – having to pick up the pieces. When it happens to a friend, it can put you in an unenviable position of having to eventually act in self-interest, because you don’t have access to the sorts of resources needed to get your friend through their particular crisis: it pains you because you have to send them away to where the (tightly-controlled) resources are, and where you know that their future is probably the most uncertain that it has ever been for them… and that is not what you want for them.

Well, that unstable situation has recently happened to a friend of mine and, therefore, to me. And, with all the will in the world, without the appropriate resources I can do nothing to help him. And, tomorrow, I have the job of going with him to the bus station in Kotka (with my ex-wife, who has been working with me behind the scenes to try and figure out how can he be supported until he’s mentally strong enough to cope), and we have to put him on a bus back to Helsinki (which is where these tightly-controlled resources are).

He came to me just ahead of the New Year, possessing only that which he could carry. He had been evicted from his flat in Kallio, a suburb of Helsinki. For a number of years, he has been studying at the University of Helsinki, where he was a German Studies major. When I first met him, he was acting as a guinea-pig for me whilst I was training as a psychologist: he had agreed to let me conduct a couple of different types of assessments on him and, since that time, we’ve been in contact on way or another. He’s been able to share with me the joys of life as a student; he’s been able to commiserate with me on the death of my father (cancer, Feb. 2007); he’s been able to visit the rather informal ‘Mad Bastard Support Group’ that met most days in the local library cafeteria here in Kotka; and he’s been able to meet me for drinks on those exceedingly rare occasions on which I’ve been able to get to Helsinki. We’ve shared many jokes and sorrows over the eight years I’ve known him, so it was a matter of answering the call to duty when he told that he was in need of some help and a couch to sleep on. My friend Andy took him first, because I was ill and not yet recovered; and on Old Year’s Night he appeared at my door needing shelter. Naturally, we set him to sleep on a ‘put-you-up’ in my lounge for a few days (because of the law here, that’s all I could let him stay for) so that we could get matters dealt with whilst he was in a place of safety. My friend is, as I am myself, Asperger-autistic and – as such – has some special everyday living support needs.

He was, as I have been, a client of a Finnish organisation providing specialist services to Autistic adults both in Helsinki and in Kotka. He was also, as I still am now, a client of his local social services department. In March of 2009, he fell off the radar of both organisations: neither Autismisäätiö nor the Helsinki Social and Disability Services could locate him. Not that they actually tried. A couple of phone calls and visits to know three times on his door is not exactly the work of a thorough social worker. For more than a year, it seems, he’s had no contact with either organisation. And neither organisation took the time to actually find him… despite their joint duty of care. As far as ultimate duty of care is concerned, the responsibility for the loss of a client is that of his social worker in Helsinki. And she lost him good!

As at Monday January 10th 2011, my friend had been technically homeless for more or less two months; and, when my ex-wife contacted Helsinki Social Services, his social worker was clueless as to whether he was dead or alive: the social worker had done nothing to clear that mystery up at all. In the meantime, my friend had been thrown out of his flat and was living quite rough in Helsinki. So, on January 10th, this social worker was made aware that she still had this client, and that he was homeless and sleeping on friends’ couches. And she was made aware of the legal difficulties that her client’s being with me would cause (because of the law on how the social services and welfare office should see two people staying in the same flat).

It took this social worker until Friday to reply to the initial call to her, made on the Monday. In this replay, she mentioned that they might be able to get my friend his old flat back, provided that he do a number of things first (including make a written application for income support from the Helsinki Social Welfare Office – essentially the same as the Social Services office; pay off all debts for unpaid rent; and a few other things as well). Nowhere in the mailing did she say, “Oh, by the way, we have found a place you can stay whilst we’re sorting all this stuff out!”.

So, since Monday, he’s been on my put-you-up in my lounge and slowly going out of his mind with worry.

What happens in Finland, when Social Services have a case that they cannot really be bothered to deal with appropriately, they let the case lapse and the client then goes into crisis and the case becomes a Mental Health Care System case. It seems that this is what is happening in the case of my friend. Neither Autismisäätiö or the Helsinki Social Services people have shown any intention to ascertain the life-status of my friend; they have not even made a proper or adequate assessment of his needs (had they done so, this situation would not have happened); and they have not been bothered to act once they were made aware of the situation. This situation has had financial impacts on those who have had to become involved because of the lack of any Social Services contact at the Helsinki end: me, because I had to buy his food when he had no money to speak of; and my ex-wife, because her getting involved has distracted her from her own work as a sole-trader consultant in autism services.

And the lack of consideration of the social worker for this component of the impact of her lack of appropriate response to the initial situation just… well, at one time, I would have said that it shocked me. These days, I cannot say that: I have come to expect this from Finnish social workers. But what it does is to gall me. It galls me because – despite knowing the possible impacts on others of not acting to get my friend a place to stay (at least for a while) – this social worker has still failed to do the one thing that her client needs her to do: help him find a roof to go over his head. Three Asperger-autistic people in Kotka have tried to, despite being totally under-resourced (compared to Helsinki Social Services), help him find a temporary place to stay at night: we have – even in southern Finland – very bitterly cold nights. It is as if this social worker is playing mind-games with us: daring me to throw him out into cold, while she sits at her desk and effectively does nothing. Since Monday January 10th, she has been taking advantage of me by not acting quickly enough, and putting my tenancy at risk in the process (to say nothing about what it is doing to my friend, who is quickly approaching a nervous breakdown as I write this article).

I cannot say now that I have any faith in social workers, especially Finnish ones: they are careless (they can always find a way to ‘lose’ a client who has specific daily living needs that they cannot be bothered to understand); they can always fail to act, if there is a friend of their client that they can guilt into taking an excessive risk with tenancy rights (which all social workers know, since it is part of their job to know this); and they can always fail to respond appropriately to a call that says that their client is homeless by failing to find even a temporary place to stay.

This social worker is very fortunate that I am not her boss. If I were, she would be looking for another job tomorrow morning (I am writing this on Sunday evening), and I would be making sure that every social services department in Finland was aware that she is – if her practice over the past two years with regard to my friend is anything to go by – a serious liability (for a good many litigatory actions in court). This social worker has case the all other social workers in such a bad light that it is hard to imagine what kind of social worker would condone this sort of malpractice. But, then again, two articles come to mind. Look at the difference between these reports in the Helsinki Times:

“Many Finnish social workers blame claimants for being poor -Study

Finnish social workers’ attitudes toward the poor are harder than those of their colleagues in other Nordic countries, according to a study published in the Finnish social policy journal Yhteiskuntapolitiikka last week.

The study found that Finnish social workers were many times more likely than their Nordic colleagues were to tell poor customers that they had themselves to blame.” (28th December, 2010)

http://www.helsinkitimes.fi/htimes/domestic-news/general/13669-many-finnish-social-workers-blame-claimants-for-being-poor-study-.html

“Study: Finnish social workers deploy tough love

In the view of some Finnish social workers, the poor have only themselves to blame.

THE ATTITUDES of Finnish social workers towards the poor are the severest in the Nordic region, it has been revealed. They are much more likely than their colleagues in Scandinavia to blame clients for their own financial hardship. This was one of the results of a study published in Yhteiskuntapolitiikka-lehti, a social policy magazine.

Norwegian, Swedish and Danish social workers instead do not tend to identify any of the causes of financial problems in clients themselves.” (7th January, 2011)

http://www.helsinkitimes.fi/htimes/domestic-news/general/13720-study-finnish-social-workers-deploy-tough-love.html

Did anyone notice the change of tone there? In December’s article about the same study, the social workers are accused directly of blaming their clients. In January’s article, the tone has softened to them “deploy(ing) tough love”. Talk about minimising the effect of the damage they do to their clients!

EDIT:

 

 

 

 

Edit: Since this friend’s placement in a temporary flat in Helsinki, I have not heard anything. I have no idea what has happened. And I have been experiencing the worst of difficulties with the same type of bureaucrats in the town I live in, so I’ve been unable to follow him up.

(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.)

Introduction:

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.

Conclusion:

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 Autistic 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.

References:

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)
Palgrave, Basingstoke

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
Palgrave, Basingstoke

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!