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The Ahead Journal

#AHEADjournal

A Review of Inclusive Education
& Employment Practices ISSN 2009-8286

CookMeetEat - a recipe for support

Anne van der Horst

Initiator, Executive Director, Stichting Villa Abel, The Netherlands

About the Author

Petra Zaanen-Groeneweg

Stichting Villa Abel - www.villaabel.nl

About the Author

Villa Abel it's a nice name said one of the students at CookMeetEat in September 2018, when I had just told the group how the name Villa Abel came into existence. Secretly I am still very proud of what we have achieved with Villa Abel to date. Proud of what we stand for and proud of the two students here at the table. They have just cooked a delicious pasta pesto for us (two supervisors). Complete with broccoli and grilled tomatoes. It's just delicious. CookMeetEat is a supplement to the counselling package we have been providing now for 2.5 years.

Although these students are in their 20s, they have no idea how to prepare a meal. They both still live at home with their parents, who are gradually reaching the end of their parenting abilities. Almost without exception all parents we meet have worked extremely hard for over 20 years to protect their loved ones. With their now adult children studying at a university, the offered protection simply falls short.

‘Growing up means letting go’. For many parents of young adults the study content is often no longer comprehensible, the university environment is complex, both the physical and emotional distance from home is large and increasing. As a parent you are no longer the discussion partner or coach you always were. There you stand as a powerless parent, while your young adult child begins his late puberty. (Research is ongoing in this area - Autism Research Centre, University of Cambridge, UK) A difficult situation for the parents, the young adults with autism and the university. They have gone through high school without too much trouble, have chosen the 'ideal' study without complicated processes and are excited that they can finally do what they enjoy doing. As for all students, the environment is full of new challenges. The environment requires skills to connect with fellow students; for the first time in their lives they are confronted with subjects that are really difficult, acquired study skills fall short, attending lectures is often a hurdle to overcome, and above all it is absolutely unclear what exactly needs to be learned. Surviving the first assessed cut-off point is critical.

At Villa Abel we aim to guide students through the maze that is university. Unfortunately for many students with autism, this challenging life is too much for them to manage. They have never experienced many of these complex and inter-related things before. Very often, many students with autism are unable to obtain enough credits in their first year to move on and have to stop their studies. The situation is spinning out of control, stress takes over and the situation very quickly becomes unsustainable.

This often results in an attempt to enrol in another study course with, guess what, the same result.

At Villa Abel we guide students at all stages, some have just enrolled in their first course of study, but others are already doing their third or fourth course of study. Study related problems are usually the basis for the first contact with us, we have developed a track record for improving study results.  During study coaching we also often encounter the need to work on  the softer skills side of being a successful student.

Vision

Villa Abel arose from an initiative of Anne van der Horst (mother of a studying son with autism and ADHD studying business administration) and Petra Zaanen (psychiatric nurse with a passion for autism). We are both convinced that intelligent young adults with autism have a lot to offer society, but that they need a helping hand to get through higher education and also go through the necessary personal development. We often see a pretty disharmonic profile among these young adults. Sometimes they are brilliant but their social development does not match the intellectual development. It’s not uncommon for some of these students’ social development still to be at kindergarten level.

The positive thing is that this can also be developed. Villa Abel wants to be a meaningful support for this target group. In addition to the supervision during study, we pay a lot of attention to social and domestic skills; to insight into one's own autism; to a healthy day / night rhythm and lifestyle and to the relationship with parents. The development towards independent and self-reliant people is our priority. We like challenges, nothing is too crazy for us. A daily challenge is the struggle with the Dutch governmental financial support arrangements for the individual student. This is delegated from national level to local municipalities, who each have their own systems and protocols to manage these funds. It is a great system we have for this in the Netherlands, however it requires management on almost an individual level. It can be at this level that parents often meet barriers.

Mission

Villa Abel started in September 2016 in Leiden (the city with the oldest university in the Netherlands, now 444 years old) with the supervision of one student. We now guide over 30 students with autism in higher education. From the outset it was the intention to develop a blueprint in Leiden and then copy this blueprint to other student cities in the Netherlands. Preparations are being made to open a branch in Rotterdam in September 2019.
The people at Villa Abel are all enthusiastic and well-educated people, who are passionate about the special target group, can work independently, are resilient, can keep both the details and the overview, want to be challenged and level with the students.

The organisation has yet to find its format, but the principles of Frederic Laloux's Reinventing Organizations (self-management, wholeness and an evolutionary goal) appeal to us very much. Here lies the challenge for us to develop and embed a Villa Abel organisational form so that the passion they feel about developing talents and enabling participation can be embedded as solid values in a growing organisation.

Coaching

Our coaches are all trained in the Autism Central Methodology with special training on coaching students with autism in higher education. Our coaches themselves have at least a college education and must be able to be quite resilient. Our students are all bright and have mastered the skill of giving (socially) desirable answers. They can present great reasoning why something is right from their point of view. You need to dig deeper to unravel the true level of understanding. One of our coaches recently put it this way: ‘I take him absolutely seriously, but I only trust it when I actually see the evidence myself’.

Study coaches work one-on-one with a student. Together they will explore the curriculum, the timetable, the subjects, the exams, the conditions, the deadlines, the timing of self-study and the projects, and translate these into a concrete plan for the coming week.  

Study Hall

image of study room with sectioned off private study areas

Villa Abel offers a room with a quiet environment. Students who are supervised can come and study here. The study coach makes an agreement with the student about this and plans the student time in the study hall. The study coach also provides guidance (together with the student) for the study hall supervisors about the way in which the student wants to / should be supervised and the points to be reported on.


There is room for 10 students in the study hall. The workplaces are separated by sound-insulating partitions. The study room is led by volunteers. These are often psychology students who want to gain practical experience. They are instructed and supervised by an experienced coach. During study hours (8.30 a.m. to 5 p.m.) one study hall supervisor is always present. He / she receives the student on arrival, offers coffee, tea and water and asks about the student's plans. During the student's stay in the study hall, the study hall supervisor monitors the study progress, the use of breaks and refreshments and he / she helps the student at difficult moments or reminds the student of agreed targets. If the student is not present at the agreed time, the study hall supervisor will contact the student and new arrangements will be made. In the event of worrying situations, the situation is escalated to the personal study coach. A report is made via the ECD (Electronic Client Dossier) system, which the personal study coach uses as reference in the one-on-one sessions.

The result of this approach is that students with autism actually do study. We regularly hear reactions along the lines of

I studied more here this week than in the last 4 months at home.

It's very nice, quiet and peaceful in the study hall.

When I go to the study hall, I come in the 'study mode' and I can do my work.

When I have been in the study hall, home is really home again and I no longer have to think about my studies in the evening.

As a result, exams are passed and credits are earned.

Housing assistance

Sometimes students need or want to live in rooms in shared student accommodation. At Villa Abel we strongly advocate of living in rooms. In our opinion, this increases the independence and self-reliance of a young adult and often creates space in the relationship with parents. However, a room in a student house, where bathrooms and kitchen have to be shared and where social interaction is necessary, is often a bridge too far for many students with autism. They may instead choose a studio in a student complex. The result is that they have to shape their own lives during the week and have to cook for themselves daily.

This requires a lot from students with autism. That is why Villa Abel also provides customised housing support. Sometimes it is sufficient if a residential counselor comes by once a week and sometimes daily supervision is necessary. In the latter case, Villa Abel forms a team of housing counselors, who make agreements with each other and with the student about the supervision arrangements. If necessary, the team communicates directly with each other in a secure group app, in which the study coach (and possibly other stakeholders) also participate. Issues become immediately clear to everyone and connections can be established quickly, before it becomes a real problem.

If a student suffers from stress due to an approaching exam (domain of the study coach), he may not be able to cook, may eat badly and go to sleep (domain of the home counselor). If the student subsequently does not get out of bed on time (domain of the housing counselor), this has consequences for the exam to be taken (domain of the study coach). Villa Abel attaches great importance to short lines of communication, so that action can be taken quickly. Too much happens in an academic year, there is little time to observe and be reactive. Classes are not repeated 2 weeks later and a deadline is a deadline.

If a student still lives with his parents, Villa Abel can also provide housing counselling in the parental home. Imagine the reaction of parents when a student (initially with assistance from his home counselor) cooks a meal for them and they can sit at the table and enjoy the meal after a day of hard work or similarly when the house is vacuumed when they come home. In this way we prepare the student in small steps for a more independent life.

A common experience for people with autism is the reversal of their day and night rhythm. This problem can have various causes. It may be that for the person with autism the night is much quieter than the day (other people are asleep and cannot interfere with the person with autism) or the temptation of playing games or other fascinations play a role in this; or there is a question of poor sleep hygiene. These are just a few examples, root cause is often a mix. It is therefore important as a supervisor to find out where the problem comes from. Only then can a suitable solution be found.

One of the solutions that Villa Abel works with is robot Tessa (or Jack).

A photo of the robot Tessa (or Jack) - looks like an egg wearing a blue jacket and hat

The student can program this robot himself with his own words, so that the robot speaks messages and reminders at the desired times. The robot can repeat the messages until a response is received. For a number of students, this works and the robot ensures that the student shuts down his computer on time, brushes his teeth and gets ready for the night and then gets out of bed in time in the morning. However, the robot does not work for all students because it is very easy to say ‘yes’ to the robot but do ‘no’. Then we have to look for other solutions. For example, we can discuss with the student how he could stop gaming, how the student could organise his evening differently, that a different alarm clock is needed, what things can be eliminated, so that daytime life is feasible and explain to him about the relationship between 'cause' (going to bed late) and 'consequence' (waking up late).

CookMeetEat and other projects

photographs of food being prepared at Villa Abel

Villa Abel is continuously developing and testing opportunities to support students with autism as much as possible on their journey to independence. The CookMeetEat project  is a good example of this. Once a week a group of a maximum of 6 students cook and eat together under the supervision of two coaches. After washing up, an activity is undertaken, often a game of sorts, or an outdoor activity, watching a movie or a chat with each other. The number of participating students is constantly increasing and in the near future we are considering planning a second evening. The participating students experience CookMeetEat as a pleasant and educational evening. There is often much laughter, but serious conversations are held, where practice is developed in informing each other. Reflecting, debating, articulating one's own opinion and experiences are exchanged about living with autism. In addition, the students learn to cook a healthy meal and are invited to taste things that they think they don't like. In particular, gaining new taste sensations is a fantastic experience for both the students and the supervisors.

The group is diverse and varied. One student may have a lot of experience with cooking and comes up with all kinds of good ideas, the other student doesn’t know how to cut a cucumber at all. One student can work with a recipe for catchwords, for the other student a fully detailed and detailed recipe (with pictures of ingredients and cooking utensils) is required. This requires a very thorough preparation of the CookMeetEat supervisors. Menus and activities are always compiled in consultation with the students. In the interpretation, everyone's wishes and preferences are taken into account as much as possible, but we do not shy away from the challenge of new experiences for the student.

From CookMeetEat and study and housing supervision, employees regularly come up with ideas to expand the guidance of our students and to further professionalise it. For example, students' social skills are being worked on in one-to-one coaching that takes place in the city, in a cafe, in a snooker bar or elsewhere in a social environment. The starting point here is the answer to questions such as ‘what does a student do?’  ‘how does a student behave?’.  If this is still too complicated for the student, we will start with a more basic social skills training.

Current developments

We are working to develop our offer to include:

• An online psycho-education program in combination with (offline) coaching

• Group discussions with themes such as stress, relationships and identity

• Lifestyle coaching

Parents

At times it is necessary that parents are also coached. The process of letting go of a care-intensive child is very complicated and emotional. Villa Abel can employ special parent coaches to give them a helping hand too. We understand the concerns parents have and can help them with the processes that they go through. In addition, the student is given the space to go through his own development and the relationship between parents and child (the student) remains intact. The purpose of this coaching is to establish a balanced relationship between adult people.

And the name Villa Abel, where does it come from?
Student houses often have a name. And often such a name is a contradiction of reality. A villa versus a student room. And Abel? Abel is the pseudonym of Anne's son.

 References

Frederic Laloux, Reinventing Organizations, June 2016, published by Laoux
ISBN 9782960133554

Cobe Vanrooy, Autism Central Methodology (Autisme Centraal Methodiek), October 2018, published by ACCO, ISBN 9789463448598

Puberty Project, Autism Research Centre, University of Cambridge UK https://www.autismresearchcentre.com/project_18_puberty

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