Posted on 29th January 2015
Support for students with ASD in Finland: challenges in the mapping process
There have been some unexpected challenges in mapping the support that HE students on the autism spectrum receive in different countries. Direct comparisons are not possible because the titles of the professionals involved in providing support vary from one country to another, as does the division of labour between universities, NGOs, health care and disability service systems. When statistics on students with ASD are not available, as is the case in Finland, individual professionals in key positions are crucial sources of information. Two such professionals have provided us with a picture of how support services and reasonable adjustments are currently developing in this country.
Timo Tapola (in the image above) is one of three study psychologists serving the 20,000 students of Aalto University in the Finnish capital region. He works with students from the School of Arts, Design and Architecture and the School of Chemical Technology, while his colleagues cover other schools within the University: Engineering, Electrical Engineering, Science, and Business. Tapola estimates that over the past six years he has worked with about 15 students on the autism spectrum, both negotiating reasonable academic adjustments and providing counselling.
No precise records are available on the numbers or later progress of these students, or on the exact interventions they have ended up receiving. Aalto University applicants are not routinely asked about their diagnoses, and even if they reveal one, these are not systematically recorded. What complicates matters even further is a general lack or slowness of diagnostic services for adults. Most students who seek out Tapola’s services have no diagnosis at all, or have only been diagnosed with mood disorders such as anxiety or depression. On the other hand, some students might have an ASD diagnosis but never need a study psychologist’s services, so Tapola would be unaware of their existence.
As the mapping stage for Autism&Uni was designed and carried out, we found the characteristics of this system rather challenging. One problem was translating questions while retaining the idea expressed in the original version, but having the question actually mean something in the context of our educational and disability service systems. Another was locating the key professionals who provide services and negotiate reasonable adjustments.
These problems are closely linked. Our colleagues at Leeds Beckett University included options in the survey forms that suggested the involvement of disability support teams operating at universities. We do not have such teams. In many questions, ‘mentor or non-medical helper’ is a self-evident option to include for those working in the British system. We do not have those in Finland, either. Or do we?
Professionals like Timo Tapola may have struggled slightly with the options on the survey forms, but further discussion reveals that they do perform tasks covered by disability support teams and mentors in the UK. Tapola writes recommendations on adjustments such as quiet space and extra time at exams. He can negotiate on a student’s behalf if views on reasonable adjustment differ. He can guide students to health care and diagnostic services or various support groups. Overlapping a student mentor’s job description, he can offer up to five counselling sessions to provides help a student with time management, structuring, setting concrete goals, and dealing with stress and anxiety.
Until now, the autistic students Tapola has been aware of have needed fairly minor adjustments, or support that has not required autism-specific services. Only very recently he has started to encounter students who need a support worker at their side for longer periods. This type of service is not provided by Aalto University, but by the disability services of the student’s home town. The workers may be called neuropsychiatric coaches, or something else, and their job description partly overlaps that of the British student mentor, while the conceptual framework and legislation is quite different. And again, from the perspective of Autism&Uni, these workers have been difficult to find and statistics on their work have turned out to be non-existent.
Susanna Hartikainen is another key professional we have managed to find, one with a view into the situations of autistic university students outside the Finnish capital region. Hartikainen works as at the University of Tampere, with over 15,000 students. Her title is Study Secretary, and she acts as the Accessibility Contact Person for the university, a position that has existed in Tampere since 2007. Over the past few years, a few autistic students per year have contacted Hartikainen or her predecessor, and she has formed the impression that the numbers are gradually growing. Again, as at Aalto University, there has been no practice of systematically recording the details.
Hartikainen works on the basis of a doctor’s written report or, less commonly, a report from a psychologist or other expert, discussing it with the student and writing her recommendations. The student then goes to the academic staff who have the final say on what will be implemented. So far, there has been no follow-up to see what the teachers accept or deny, or what effect the accommodations have had on the students’ later progress. The students have not come back to complain, so it is likely that the academic staff generally accept well formulated requests. The recommendations have concerned arrangements like extra time at exams or alternatives to assignments involving group work. Hartikainen is not aware of any students at the University of Tampere requiring extensive, hands-on support on the basis of ASD.
Next year the University of Tampere will start a project to assess the effects of the accessibility coordinator’s work. This could help us to learn a little more about the students with ASD, but it will not allow comprehensive mapping. Like Tapola at Aalto University, Hartikainen probably does not meet all the students with ASD starting their studies in Tampere. Some have no diagnosis and may only seek help through student mental health services. Some may be diagnosed but choose approach academic staff directly with a doctor’s recommendations.
A system very much like the one used in Tampere is described in an ‘Application for SpeciaL Study Arrangements’ form published by the University of Oulu. Other Finnish universities may have different arrangements. Unfortunately, it appears that we are a long way from being able to give a simple answer to the simple question of what services Finnish HE students with ASD usually receive. In the course of the project, we have met some who are quite happy with the arrangements provided for them, as well as professionals ? study psychologists, neuropsychiatric coaches, NGO project workers ? with years of experience in negotiating adjustments, or in doing expert, creative hands-on work building interventions tailored to the needs of a specific individual. There is definitely a lot of good work being done. The most obvious fault might be lack of consistency and transparency from a young student’s perspective. You might get excellent help, if you find the right people, but if we are having a hard time locating them, it cannot be easy for a student struggling with the application process or their first year at university.
Further inequality is created by a combination of three factors:
1. shortage of diagnostic services for adults,
2. skeptical attitudes among doctors on the usefulness of ASD diagnoses for people capable of independent life, and
3. some universities insisting on diagnoses and doctors’ recommendations before they agree to study adjustments, when statements from other experts could probably give them the same or, in some cases, better information.
We believe that similar factors, and differences between countries, have probably made it difficult for professionals in the Autism&Uni partner countries to answer some of the survey questions. Some qualitative description of these issues could be highly beneficial to us all, giving professionals across Europe new ideas on ways to provide effective, high quality services and implement reasonable adjustments.
Timo Tapola considers this crucial if we wish to keep improving the situation of students on the autism spectrum. – “We need to describe the current situation as it is.” Without knowing where we really are now, he says, it is hard to move towards something better. Also, he sees some room for improvement in Finland in the area of recognising different learners and developing alternative paths for them to follow. Without proper recognition, he feels, adequate tailoring of services is quite challenging.
For further information on Finnish universities and their accessibility practices, see:
School of Arts, Design and Architecture
School of Chemical Technology
Back in 2005, I gave a comprehensive lecture at the Autismiliitto Empowerment Project Conference at the University of Tampere in which I outlined very systematically: the kinds of issues faced by prospective higher education students on the autism spectrum; the kinds of issues faced by such students after entry to higher education (if that has been achieved); the kinds of access and support measures that would level out the playing field for such students and equalise opportunities properly. My talk was titled: “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.”
In this lecture, I dealt with problems experienced in trying to gain entry into higher education: the problems with entrance examinations and subject examinations, as well as finding one’s way about the campus. I outlined several ways in which support could be provided in order to alleviate such problems. These are the problems that the system itself sets up. I looked at difficulties related to the triad of barriers to participation that define the autism spectrum, and gave suggestions for use as effective support measures in response to those barriers. These are the problems that arise from a very evident mismatch between student and his/her socio-physical environment. I then dealt with issues related to the creation of a level playing field, and what that would entail, ending with an overview of the benefits that adopting such a practice would bring to higher education institutions in Finland.
It seems that the suggestions given in the lecture did not make their way(s) to the relevant authorities, since – for some time following this event – I was searching for evidence of change in policy in higher education institutions whilst writing a consultation document for a small educational consultancy business. I still have the research notes from that period. I wonder if this information might be useful here.
David N. Andrews
M. Ed., C. P. S. E.
Psychologist (Teaching, Learning & Development) – UK
Psycho-educational Consultant – RoW
Kotka, Finland