Posted on 06th October 2015
Support and Challenges in the Finnish Higher Education system – A student’s voice
During the research phase of the Autism&Uni project we received survey responses from nearly 300 people, systematically reviewed the available literature and spoke to numerous higher education students on the autism spectrum in order to learn from their experiences.
One of the students who has told us her story is Heidi Lindholm (image above), currently studying Nordic Literature at the University of Helsinki in Finland. Alongside her studies, she has for several years been active in a national association for autistic adults, engaging in public speaking and running a peer group focusing on art and culture.
The challenges that Heidi has faced in the university environment illustrate many of the themes that came up repeatedly in the Autism&Uni questionnaire survey. To start with, diagnosis and services do not always come before entry into HE, or even in the first months of study.
I was diagnosed with Asperger’s syndrome in my third study year. At first, I did not understand that this had to do with more than just my difficulties with social interaction.
Somehow I knew that I needed extra time to complete the assignments, but because there was so much to do it was not always possible to arrange that extra time. It got to a point where I would even spend nights at the University. I didn’t know how to structure my schedule properly, because I didn’t even know I had special needs that require a higher than usual level of structure.
Issues that are not addressed early on can culminate in serious problems.
Before the Master’s Thesis stage I managed somehow, even though the strain was severe, but the thesis turned out to be too much to handle. I am hoping to finish it, but at the moment I am not able to fully focus on the work.
From the perspective of our project, we need to ask what kind of professional practices we could recommend to prevent such situations. We need to consider what service systems and professionals are doing, and what they might want to do differently. In Heidi’s case, lack of coordination between different professional bodies seems to be an important factor. Her support network includes a psychiatrist, disability social workers, a neuropsychiatric coach from a foundation specialising in ASD, and workers at a mental health association. Nevertheless, she has ended up relying on last-resort financial assistance from the social services since reaching the end of her state student grant. She has only recently found out about some of the financial benefits that could have been used to support her through her studies, had anyone advised her to apply for them.
I do have my workers at the social and disability services, but they don’t know about Social Insurance Institution benefits and such. My psychiatrist seems to be the one who knows the most about everything.
One of the gaps in the services Heidi receives involves communication with university bureaucracy, again a common challenge in the light of the Autism&Uni survey. None of the professionals in Heidi’s network will accompany her to deal with a difficult discussion at her faculty office. Instead, she has to handle the situation alone, and afterwards try to recount what was said, so that her supporters can offer her advice.
I visit a neuropsychiatric coach twice a month, and my thesis is one of the topics we discuss. My coach is really fantastic with anything related to the autism spectrum, but she knows nothing about university practices.
At the moment, I frequently go to a cultural workshop run by an association that serves people with mental health problems, and this helps me a lot with stress management.
There is little involvement by university staff in the support network, despite the fact that completing her degree is the most acute problem in Heidi’s life, and despite it being in the University’s best interest to help students like her. Firmly established practice regarding reasonable adjustments for students on the autism spectrum appear to be lacking.
I have a really good thesis supervisor who understands my Asperger-related issues. It’s sheer luck, as I receive no official support at all from the University. I think there is a worker in charge of accessibility, but they mainly deal with physical impairments.
Despite her ongoing difficulties, Heidi is optimistic and wishes to encourage young people on the autism spectrum across Europe to persist and to keep seeking the support they need.
I have heard that in other countries university staff may help students with issues that are not strictly part of studying, as such. It would really be great to have some instance here that could take care of neurodiverse university students in a more integrated manner.
If you reach a dead end in your studies, do not hesitate to ask for help.
Clearly there are examples of good practice in Heidi’s story, as well as opportunities to re-think and perhaps integrate support mechanisms better. Heidi’s account, like many others, will inform the Best Practice Guide we will publish in January 2016 and also the interactive toolkit for students to use when they embark on a higher education journey. We are very grateful to people like Heidi for being so open about their experiences.