Throughout her life Hannie van der Meulen (75) has taken in children with problems. She speaks of no fewer than fifty foster children, many of whom had a disorder on the autistic spectrum. In the house she shares with former TU/e lecturer Wim Nuij she will soon have space for two TU/e students. “Unlike a student house, this is a low-stimulus house. We are offering accommodation to two TU/e students, provided they are autistic.”
It is not that she made deliberate choices or had an aim in mind, rather it is that her life has taken “an unusually course". Hannie van der Meulen relates how it has come about that in six months' time she will be making two floors of her home available to two students. In telling her story, she takes her time and omits no detail. Gender - not an issue; study choice - not an issue. There is just one condition: they must be on the autistic spectrum. And for Hannie it goes without saying that there will be contact with their parents.
Hannie grew up in a complex blended family in a tiny village in Friesland. “I am Frisian through and through, and that means nothing scares me.” Studying was not on the cards for Hannie; she dropped out of secondary vocational education (mulo) due to "worthless" education at primary school. But a nursing program and part of a psychiatric nursing course in Zuidlaren opened her mind to what later became known as autism spectrum disorder (ASD). “I have always been very observant.”
Her first foster child came along when she already had three children of her own - by the man who during their first meeting in the hotel where she worked fell head over heels in love with her and her beautiful long hair, but that's another story. In a few broad strokes: she fell pregnant at twenty-four, married him, then lived through a number of hippie years in Amsterdam before moving to Best. She was happy when he left her after nine years, and her years as a single mom were good ones.
Her friendship with Wim Nuij (then living in Nuenen) resulted first in twenty years of living apart together and then – at the insistence of Mr. Nuij senior – in marriage. It has been twenty-five years, as of last September, since this status change. They found a house with plenty of space. The arrival of more and more foster children, “at one point no fewer than ten at once”, happened very naturally.
The older sister of her first husband is the person she credits with bringing foster children into her life. They also came to her from youth care services. “Corry Kersten, my former sister-in-law, was the first person in the Netherlands to foster children with a psychiatric disorder. I've always been able to get on very well with children and I could always make room for them.”
The first child she took in was a toddler with Asperger's. “He had an IQ of 150, just like Wim, and was very autistic. His mother felt rejected; she couldn't connect with him.” But Hannie could. Not asking too much in the way of social contact and skills, no probing questions, and letting the child calm down and relax, these are her secret weapons. Of all her foster children only this little boy asked if he could call her mommy, says Hannie.
When someone with ASD gets stuck while carrying out a well-conceived plan, a mental block can arise that they themselves cannot resolve
Many behaviors exhibited by children with autism she recognizes in Wim, who spent forty years working as a math lecturer at TU/e. She tells him this and he gives a single nod of agreement. She mentions withdrawing from groups, stagnating, mental blocks, how indispensable structure is. “In the past when his brothers and sisters were at home, he would go and walk the dog.” “He went to Sweden to take his doctorate but dropped out.” “At home he has all the parts he needs to make a piano lamp, but that's as far as he gets.” “When the dog died I bought a new one because for Wim the day had lost all its structure.”
Wim does not find it easy to tell how he found the business of teaching. He wasn't aware of any problems, derived satisfaction from his work and giving instructions felt natural to him, Hannie shares. “He is inclined to be oblivious to whatever is happening around him. I suspect there was little interaction, except with those students who operated on his level.”
When someone with ASD gets stuck while carrying out a well-conceived plan, a mental block can arise that they themselves cannot resolve, Hannie knows. “Someone is needed who can take the next step with you.” As for the piano lamp, she is under no illusion. “I wonder how he will get on with the lamp-to-be, and whether it will ever be switched on in our lifetime.” So why doesn't she take the next step with him? “It's none of my business.”
Students in the house
Over the summer the last tenants will make way for two students keen to live in a low-stimulus house. Two small rooms will become available for a sum she is open to discussing, per person near the five hundred euro mark. Dining and cooking arrangements to be agreed. “We'll see,” says Hannie, totally relaxed. “If they want to do their own cooking, they can use our kitchen. If they don't want to, they can sit down to meals with Wim and myself. The more important point is that we want to offer an opportunity to students who wouldn't feel at home in a busy student house.”
The stereotypical image of autism is outdated. The old notion of people with autism is this: they are supposedly reluctant to make contact, have no empathy and have a bizarre talent in one particular field. Seven new insights reveal that this notion is mistaken. Read here the NRC article in Dutch in which experts summarize their research.
Anyone who takes a little longer to complete an exam or perhaps their entire study program due to an ASD diagnosis and needs practical help doing so is required to pay a visit to the student counselors. Patricia Veling is one of the team and she tells us how she can help.
“We arrange exam provisions, request financial compensation when the student falls behind with their studies and we advise the examination committee about delaying the binding recommendation (BSA). We always sit down and talk with any student who comes to us for help. Where an exam is involved, it could be that more time is needed or that a low-stimulus room has been requested, or that the student would like the invigilator not to wear squeaky shoes while patrolling the exam hall. In the case of special requests like the latter two, we advise the examination committee and if they give their approval, we make sure the request is logged in Osiris so that the exam organizers can arrange the provision.
Ten students per exam period
More than 2500 students are currently registered for exam provisions. This academic year nearly 400 students made their first ever request to the student counselors for these services. Eighty percent of this group is struggling with dyslexia, the others have a medical diagnosis – physical or psychological, AD(H)D or a form of autism. Veling estimates that just under ten percent of those asking for help has ASD.
When a student is falling behind with their studies, a student counselor can help with applying for financial compensation to DUO or, in some cases, directly to TU/e's own profileringsfonds (student financial support). “First of all, though, we always ask the student what they themselves have done to avoid overrunning,” says Veling. To arrange a postponement of the BSA, the student counselors take on the role of personal circumstances committee. Once the personal interview has been held, this body advises the examination committee.
A student with ASD meets with the TU/e student psychologist at their own request, or after having been referred by the student counselor or advisor. Marloes Hartman tells what is discussed during an intake interview. “I explain the expectations held by TU/e and point out difficulties the student may encounter. It's useful to have the parents or carer/guidance provider present because it may be easier for them to explain the guidance in place during high school. I point out that here at university more independence is expected of them, that it really will be the student's responsibility to ask for help whenever they face a problem and that he or she must not forget to read all the emails they receive from TU/e. We can offer help to anyone who has trouble planning or maintaining an overview.”
This help comes in three forms. There are weekly group meetings at which students with AD(H)D and ASD learn to plan their studying. Personalized help takes the form of individual meetings at which the discussion focuses on situations in which the student runs into problems. “Group work, for example,” says Hartman. When the limits of the student psychologist's help are reached, the student is referred to external sources of guidance. If it is psychological help that is needed, this is arranged through the family physician. For accommodation, Hartman has contacts at Stichting Jados, a national organization that offers guidance to young people with autism.
When asked about their experience of students with ASD, lecturers are cautious. “I don't know which students are somewhere on the autistic spectrum,” says Professor Peter Baltus of Electrical Engineering for example. He may occasionally have his suspicions but that is as far as it goes.
Associate Professor Alessandro Di Bucchianico, on the other hand, does have experience, since he supervises graduating students and is Program Director of the Master's of Industrial and Applied Mathematics. He acknowledges that it is difficult to recognize students with autism. “It's not so that all students with ASD are happiest looking down at their shoes, some are very articulate and actively involved. You don't find out until you speak to them one-on-one. I've observed that they almost all have great difficulty taking decisive action and that they take what you say and ask them to do very literally. I've also noticed that ASD students don't respond well to criticism of their work and often see it as being unfair rather than as motivation for thinking how they could improve something. This is particularly an issue during the graduation phase.”
Watch your step with humor
This lecturer suspects a higher than average incidence of ASD among math students. “An autistic person seeks certainty and math offers that.” A tip he would like to give his fellow lecturers is to ask for summaries, to see whether the assignment or explanation has been clearly understood. “It is important to give regular feedback, including positive feedback, so that the graduating student knows whether he or she is on the right track. Though actually this applies equally to all students.” For the rest, Di Bucchianico suggests caution when using humor. “Something meant to be funny, to set a student at his or her ease, can have an adverse effect because remarks are taken too literally.”
TU/e has signed the UN treaty on inclusive education, and in so doing has expressed its ambition to become an inclusive educational institution, one at which every student studies on an equal footing with other students, irrespective of their background. In order to make this possible, the Study+ program has been created. But the program director senses an incipient moral dilemma. “I wonder how this sits with our desired engineer of the future who can work in multidisciplinary groups. And whether Challenge Based Learning is appropriate for students on the Study+ program.”
Lecturer Elisa Bergkamp (Mechanical Engineering): “It strikes me that as lecturers we are not always aware of which students are struggling with ASD. Sometimes a student responds in a manner that to others in their study group and/or the lecturer comes across as 'irritating' or 'difficult'. I sometimes start wondering whether the behavior can be explained by ASD and think maybe the student really didn't mean any harm.”
Some years ago Bergkamp was asked by her program director whether she would take into consideration the ASD diagnosis of one of her students. “The student had already taken the Engineering Design course twice and not passed. In a meeting with the student and his guidance provider, we concluded that at the end of meetings it was really important that definite agreements were made about the division of tasks among the group members.” In addition, behind the scenes Bergkamp ensured that the student was placed in a group with another student with whom she had previously had a good study experience. “While the group was working I paid particular attention to whether the group did indeed make clear agreements, and the student then completed the course without any problem.”