The project SENSHOME is co-financed in the framework of the cooperation programme Interreg V-A Italy-Austria and the European Regional Development Fund (ERDF).
April 2 is World Autism Awareness Day. In this framework the research unit Active and Assisted Living [1] at Carinthia University of Applied Sciences organized a regional networking event to increase autism awareness and to present research activities in this area.
[1] Forschungsgruppe Active and Assisted Living (AAL) und Institute for Applied Research on Ageing (IARA)
SENSHOME is a research project in this field. The project develops a new smart home design to support people with autism regarding their autonomy and independence. The main idea behind the project is to foster autonomy thereby reducing the need for assistance while maintaining a high degree of privacy. A network of strategically placed sensors recognizes potential risks and enables more comfort and wellbeing thanks to the adjustment of room conditions like temperature, humidity or acoustics, taking into consideration aspects of energy saving. At the same time the project aims at developing a smart home and interior design concept which adjusts to the needs of people with autism in different living areas (houses, apartments, assisted living facilities).
We were delighted to welcome excellent speakers to the event who guaranteed strong and authentic presentations on the topic of autism:
- Dr.in med. Christine Preißmann is a general physician and psychotherapist who was diagnosed with autism at the age of 27.
- Elea Engel is a student who was diagnosed with autism spectrum disorder and who actively participates in the project SENSHOME.
- Mag.a Maria Hirczy is a psychologist for assisted and partly assisted living for people with autism spectrum disorder at alpha nova in Graz.
The event was moderated by Sandra Lisa Lattacher who works as a research associate in the project SENSHOME.
At the beginning of the event, Daniela Krainer presented the main pillars of the SENSHOME project. She holds a diploma in ergotherapy and medical engineering. Ms. Krainer is the project leader of SENSHOME at Carinthia University of Applied Sciences and is an expert in the field of user centred development and evaluation of AAL technologies. SENSHOME is a research project in the framework of INTERREG V-A Italy-Austria. It takes place from 2019 to 2022 and is co-funded by the European Fund for Regional Development and the Carinthian Economic Development Fund (KWF). The project partners are Carinthia University of Applied Sciences, Free University of Bolzano, University of Trieste and Eureka Systems. Inklusion:Kärnten and P.SYS Caring Systems are associated project partners in the region of Carinthia.
Lukas Wohofsky provided more detailed insights into the research processes in SENSHOME. He holds diplomas in healthcare and nursing as well as Health Assisted Engineering. Before becoming a research associate in the project SENSHOME, he also gained professional experience in the field of home care. He presented the user centered design process of the project and how participative methods are used to develop a set of functionalities based on identified needs which are an essential step towards concrete implementation. SENSHOME bases its research on activities with young persons and adults with autism, as well as their families and caregivers, as the end user is in the centre of all research activities in this project.
Answering the question whether the replacement of personal activities by digital means can be considered as progress, Mr. Wohofsky pointed out that it will always be a question of finding the right balance between technical and personal assistance. The main objective is to support people with autism and their relatives in their independence and while there is no one-fits-all solution, current efforts are pointing towards the right direction. Ms. Krainer added that social contacts are an essential topic that has to be considered from various angles. Technical support systems should not replace personal contacts but take over certain functions to free time for social activities.
An interview with Ms. Elea Engel was next on the agenda. The video had been pre-recorded and was streamed during the event. In the interview led by Mr. Philip Scharf, Ms. Engel shared personal insights regarding the diagnosis and what it meant in daily life, including perspectives on the social environment, acceptance of people with autism and self-help groups.
You can watch the video under the following link:
Ms. Preißmann, a general physician and psychotherapist, was diagnosed with autism at the age of 27. She runs a private practice for psychotherapy in Germany (Roßdorf in the district of Darmstadt-Dieburg) where she offers general psychotherapeutic treatments for her patients. Ms. Preißmann has committed herself in many ways to further the cause. In her presentation, Ms. Preißmann gave an overview on the current state of knowledge regarding autism, introducing her own experience during her school years and in her professional life.
You can download the presentation of Ms. Preißmann via the following link:
Maria Hirczy is a clinical and health psychologist at alpha nova Graz where she works with people with asperger autism and high functional autism in residential communities allowing independent living. Her presentation was divided into the three main pillars of her work, mainly stress reduction, self-organization and personal development. She gave an interesting insight into perspectives and methods gained from her professional experience in all three areas. Regarding the question how relevant SENSHOME was for her residential communities, she said that she saw great potential in the project. However, the focus had to be on life quality. The surveillance factor would lead to a higher degree of independence and less personal assistance on the spot and this could reduce risk factors leading to a greater degree of freedom, however the ethical component had to be given ample consideration. This was confirmed by Ms. Krainer who added that the usefulness of the system has to be clearly perceptible and recognizable, and that ethical considerations were essential.
The overview of the three pillars and the presentation of Ms. Hirczy can be found here:
The last official item on the agenda was a general discussion. All participants were invited to ask questions and share their opinions.
The first question coming from the audience concerned independent living: How was it be possible to recognize the right moment to move out from the parents’ home into an assisted living facility for instance.
Ms. Preißmann answered that there was no right or wrong here – she moved out at the age of 45 for instance. Each person had to be considered individually regarding their personal abilities, the overall situation and their individual wishes. A solution should be found together with the persons concerned – young people should generally have the possibility to lead an independent life. Trying out independent living for a period of time could be an interim solution.
Ms. Hirczy confirmed that independence could be learned gradually at home by taking over concrete tasks. She explained that parents should not replace social contacts with peers.
Regarding the question whether single or shared accommodations were more frequently used, Ms. Hirczy stated that both options were equally fostered. Due to the corona epidemics interest in independent living has also increased. The decision was an individual one.
The next question from the audience concerned the diagnosis of Ms. Preißmann and how it helped her to support people with autism. She answered that it did actually help her to better understand the problems people with autism were faced with. Her patients often felt exhausted even when they hadn’t done much which was something neurotypical persons often had trouble understanding. Sensoric overload was another thing that neurotypical persons had difficulties to understand. However, her own diagnosis could actually be both an advantage and a disadvantage. Ms. Preißmann explained that there were two more critical periods in life additionally to childhood. The first one was the beginning of adulthood when school structure ended and new strategies were still missing. After a relatively calm period, the next critical stage was a crisis situation around longer and more intensive work phases very often leading to an additional diagnosis of burnout. What helps in general are a good support system and a continuous professional activity.
Another question concerned the age at which autism was most often diagnosed and whether school psychologists, social workers and teachers were specially trained in this regard. According to Ms. Preißmann there were more and more events held for teachers, especially also in Austria, and awareness among social workers and psychologists regarding autism was steadily increasing. A lot of the awareness raising activities take place at school, also in Austria. According to Ms. Bierbaumer who works at Inklusion:Kärnten, an associated partner in the SENSHOME project, more children are diagnosed at an early age today. There is a special team working at Inklusion:Kärnten which is especially well trained in this area and which can be asked for support and counselling by schools. In general the situation could still be improved.
The observation that a deficit oriented image of autism persists and is being reinforced in Austria not least due to a very one-sided therapeutic offer (behavior therapy) was commented by Ms. Bierbaumer in a way that behavior therapy was always deficit oriented. The therapy is individually agreed upon with the client and is based on the essential pillar of relationships. Ms. Preißmann also said that the focus often was on a deficit oriented approach and there were several reasons why it could not always be switched to a strengths-oriented one. The financial aspect was one of them as financial support is measured based on deficits. However, a deficit oriented perception of autism existed independently of therapeutic approaches and behavior therapy is currently one of the most important measures for people with autism. Based on her professional experience Ms. Bierbaumer explained that basically efforts were directed towards helping people with autism to deal better with the world as we know it. But it was also important to restructure the environment in a more autism friendly way which could however conflict with behavior therapy.
Ms. Hirczy confirmed that according to her experience one could get the impression that measures only focused on deficits. There were efforts to concentrate on strengths and ressources, however a lot more could be done in this regard.
One participant added that it was often a sensitive issue especially for young people when the focus was placed on constant improvement. A possibility to concentrate on strengths and improve self-confidence could be the focus on motoric abilities where progress can be made. A connection was made to ergotherapy by Ms. Krainer at this point.
Elea Engel talked about communities in her interview and mentioned Autism Speaks [2] from a critical viewpoint. The next question concerned everyone’s experience with autism communities and contact points in the internet regarding the topic of autism. Ms. Hirczy was certain that without the communities there would be much less diagnoses. Self-diagnosis often happens via groups/communities and only at a later stage a diagnosis is made by a physician. Misdiagnoses (eating disorder, depression, burnout) happen often and while these are comorbidities of autism they aren’t the actual diagnosis. Autism Speaks and ABA [3] are viewed very critically within the community which reports partly confirm.
Ms. Preißmann stated that ABA was not practiced the same way today as before and that today it was a synonym for very meaningful behavior therapy. Generally communities are very important especially because few experts exist. They are important contact points, however they cannot replace a professional diagnosis and therapy.
The following YouTube Channels have been recommended by Ms. Hirczy in this regard:
- pinkspektrum: https://www.youtube.com/channel/UCONIeiHv7IKHpgcFeklTXLQ
- Galoxee’s Asperger TV: https://www.youtube.com/channel/UCRWFuX7qA_rcO9o0ix65gbw
- InsideAut: https://www.youtube.com/channel/UCOSLJM6f_o6RntWWNlYQIvA
- Girl from Planet Aspie: https://www.youtube.com/channel/UCXPdc2EPzJMYsPd8C2koiVQ
- https://autismus-kultur.de/
- https://aspies.de/selbsthilfeforum/
An interesting morning marked by interesting dialogue and respectful exchange came to a close. The organization team thanked the audience for their active participation and their constructive contributions during the discussion. To close the event all participants were invited by the organization team to follow the project activities via different social media and information channels until on-site events at Carinthia University of Applied Sciences would be possible again.
[2] Autism Speaks: A non-profit organization founded by Suzanne and Bob Wright in 2005.
[3] ABA: Angewandte Verhaltensanalyse or Applied Behavior Analysis (ABA)