| Autism - NL |
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1. Introduction.
Young people, diagnosed with an autistic spectrum disorder, are streaming more and more frequently into higher level education and are experiencing there study problems and incomprehension. The handicap + study helpdesk are also receiving queries about study problems from students with autism. Both students and trainers need more information about study with ASS. Handicap + study, the expertise centre for study with a disability took the initiative to set up a commission 'Studying with Autism’ which has gathered the information into a reader ‘Autism and study in 3rd level’.
The commission studying with autism gathered information for one and a half years about how unnecessary obstacles in 3rd level for students with ASS could be lessened. Advice was also given to study advisors in the technical departments of both scientific (WO) and higher professional education (HBO), as many ASS students choose these courses. ReaderThe reader is intended for (prospective) students with ASS in HBO and WO and their support staff such as study advisors, student deacons and professors. You will find general information about autism, advice for students, teachers and support staff as well as tips to aid study success in this reader. There is an inventory of guidance and support availability throughout the country. MisunderstoodStudents with ASS don’t receive adequate specialized support. They usually have come a long way already and are regularly faced with problems which hinder their studies. The kern problem with autism rests with the processing of stimulate by the brain. Students have great difficulty in selecting, ordering and attaching correct meaning to the stimulate coming their way. In order to cope as well as possible with these difficulties they are dependent on well adapted support from people who understand their difficulties. Professors, deacons and support staff are usually lacking specialized knowledge about autism. ‘No two autistic people are the same’ A Personal ExperienceIt took Ewout Pool (24) 6 years to deal with the fact that he has an autism related disorder. At this stage he has learnt to deal with it and can easily talk about it. He is doing it for others with an autism disability. Pool wants to ensure that there is more attention paid to the typical problems experienced by ASS students by higher education.
Ewout is in his 6th year of history at the University of Utrecht specialising in middle age studies. He completes his study this year with “criminality in late middle age Utrecht” and hopes to find a job with the Utrecht archive institute or with a publisher of history books. E communicates with ease and is very sharp. But as he explains it is learned behavior. “for example I tend to stare at a chain or a picture. Now I am aware that other people find this unpleasant. And that you should always keep an arm-length distance from people. I’ve also trained myself not to keep eye contact for longer than 3 seconds, So the other doesn’t experience it as unpleasant" According to Ewout. When he was 13 he was diagnosed with PDD NOS, pervasive development defect not otherwise specified being the official term. Characteristics of this condition are serious social contact problems, verbal and non-verbal limitations, but to a lesser extent than people with classical autism. Ewout explains that it is difficult to learnt ‘social cop on’. The explanation for his reasonable though not automatic social intelligence is that his mother ‘spoon fed’ him with it. “If you can do another a good turn then you should" according to Ewout. And that is why he researches autism and study with PAS in his free time. Period of timeEwout felt at home in primary school because it was a small cosy school with a lot of attention for students. His disability was noted but was diagnosed as MBD, Minimal Brain Damage. When he was 11 he went to a boarding school in Groningen as it would be good for his ‘brain problem’. I wasn’t suited to the boarding school itself but it was there that I came in contact with a very good psychiatrist in the academic hospital. He diagnosed me correctly. If I had been born 30 years earlier I would probably have been locked up in a psychiatric institution which I would have only been allowed leave once a week. Because of this it is lucky I live in this age, and that my mother always made sure that what I needed happened. I am very grateful to her for that” according to Ewout. Ewout did his 1st and 2nd years (bridge classes) at a paedological institute, and then went to the Pleysier zmok school in the Hague. This school obtained experience with autism partly because of Ewout. Classes consisted of max 8 students and the students all did state exams which meant they didn’t have to do any school research. The individual attention, the good structure and the personally evolved learning curve all contributed to his feeling really at home there. Ewout “ even so I was very secretive about it in Almeer. People had to perceive me as normal. But then it was silly that that I told people that I had to go to school in the Hague every day. Minimum marksThe changeover to the university was less of a shock than he expected. Ewout “That was because you could finish a subject in blocks of 6 weeks. Contact with other students went very well. In such a group of 15 students and a mentor I told a few of them what was wrong with me. And that was accepted. I did get only the minimum mark always around a 5 or a 6. But I only failed two subjects and in the 2nd year I had my preliminary exam. With middle age studies I like the distance in time and there is plenty written about it. I had no official support in the university although I spoke to them beforehand with my mother and someone from the Pleysier School. I would advise other autistic people to study something they are interested in with not too much social interaction. History teacher wouldn’t be a suitable career for me whereas researcher in an archive would. The conventions are fixed there. I know a teacher who has Asperger and has a lot of trouble keeping discipline. Then the Pleysier school placed a video recorder in the class in order to confront him with his behavior. He learnt a lot from this and it went better afterwards. But I would avoid that sort of situations. Teaching SystemWhen Ewout knew that he wanted to study history, he looked into which teaching system would suit him the best. It ended up being Utrecht. ‘The thing an autistic person really hates is that problem oriented teaching system. An autistic student sitting in a group like that doesn’t know what to do, there is too little structure. In the end they get into a lot of trouble with their fellow students and the tutor. That is a complaint often heard from autistic people. They prefer to work alone or with a very clear description”. He would\also advise autistics to steer clear of their ‘fixation’, an obsession for one particular subject in which people can get totally lost. “It depends on if your ‘fixation’ has a practical application. If you are fixated on street lights then you’d have to think of something else but if you are fascinated by space travel or computers and if you have the ability to do something with it then maybe it would be ok. No two autistics are the same, take that from me. And that is the problem because there are no standard solutions for us. My rule of thumb is that you should always tell people what is wrong with you, or at least what helps you. If you keep denying your problems as a student, it won’t work. Where that’s concerned a student supporter should always encourage you to tell the group. My thesis assistant is very personal and structured, perfect. We make work schedules together and he gives information in easily digested chunks, while giving tips that are academically responsible.
02. General
The Dutch Autistic organization uses the term Autistic Spectrum disorder. Spectrum is used in the sense of a multicoloured fan, to demonstrate that an autistic disability can have many forms of expression. The DSM-IV, an internationally used classification, recognizes three main types:
In practice there are sub groups which are not so easy to distinguish. In the social sphere there are 4 groups distinguishable:
ASS is a disorder in the processing of stimuli People with ASS receive sensory stimuli but process them differently. They often pick out one detail and assign a literal meaning to it. They have difficulty in understanding the stimuli in a meaningful way. They perceive things but are less proficient in making the connection between things, people and events. The world is more like a state of chaos for them with a jumble of impressions. Because of their difficulties in attaching meaning to perceptions, it is very difficult for them to gain insight into their surroundings. People who find it so difficult to see connections in their world are bound to have difficulty with:
Explanatory TheoriesAt the moment there are three theories which try to explain the problems with which people with ASS wrestle. These are the Theory of Mind (T.O.M), the Central Coherency Theory and Executive Function.
Executive Function is connected to organization and planning of behavior. When the executive function doesn’t work properly, then there is too little direction given to brain processes which adversely affects complex behavior. Complex behavior is necessary in situations which demand fast and flexible reactions.
By Theory of Mind is meant 'having a theory of consciousness'. It hinges on the understanding that every person has their own thoughts and perceptions which are separate to another’s thoughts and perceptions. This understanding makes it possible the view matters from a different (personal) perspective. It is the most important pre-condition for the development of social insights and abilities. People with ASS have a badly developed theory of mind and can therefore onluy experience the world from their own perspective.
Central Coherency Theory refers to the tendency of people to gather information together in order to attach meaning to it. This appears to often be problematic for people with ASS. The focus more on details and don't get an overview because of this. This phenomenon can present itself with all sensory perceptions for example in the perception of sounds and voice.
III What are the consequences for students with ASSMeasure of Independence In the case of students with ASS, there can be areas where the development of independence has reached its limit. They can find this difficult themselves to accept and to report. Because of this it is not always apparent during the supervision meeting(s) where eventual problems can arise in the course of the study. Regular consultation with people who are close to the student like parents and assistants from the RIAGG (umbrella organization for people with psychological problems) is to be recommended. Distraction and concentration problems This ties in with the difficulty of seeing the broader perspective and in the inability to see the connection in matters. All stimuli are given equal importance and so constantly demand attention. Because of this the attention is constantly drawn to other matters. Concentration problems appear because of bad filtering and attention to the information at hand. Problems with placing in order and with organization There is less insight into general principles and therefore difficulties with meaningful arrangement in order. Because there is a need for placing things in order, the person with ASS has usually already developed a system which is not really helpful. People with ASS find organization difficult also. Organisation requires forward thinking, something that people who are attached to the here and now find very difficult. A limited range of interest and a tendency towards rigidity Because of their bad overview, the tedious arrangement of impressions and the difficulty with planning and delineation from future actions, the field of interest becomes narrowed down to bite size pieces. This negatively influences the planning, delineation and starting of future actions. Communication difficulties People with ASS have a strong tendency towards concrete as opposed to symbolic thought. Difficulty with symbolic thought has a direct negative impact on the ability to communicate. Communication stands and falls with the ability to think in symbols. The limited reciprocity also limits communication: There will be less inclination to exchange, while the mutual stimulation, the development of self through others will often be lacking. Because of this people with ASS make less use of the positive forces around them. Stress, feelings of inferiority and depressed reaction Stress comes because of learning difficulties and not understanding matters. Rigidity is perceived as unwillingness, deviant communication is seen as ridiculous, slowness in thinking as laziness, limited reciprocity as egotism. 03 IntakeBy holding an intake meeting you can provide adequate support at an early stage and take correct measures. Students with ASS, who have chosen a particular course or are still busy with the selection process, should make an appointment with the educational institution as soon as possible for an intake meeting. Most higher level institutions and universities have a student deacon or contact person who looks after students with a disability. Who carries out the intake meeting and whereThe organization of the intake and the support offered can differ per institution. Support can be divided into the so called first- and second- line support. The support person in the first line is then a mentor, tutor or study advisor involved in the course taken and in the second line it would be a psychologist or student deacon for the institution. Also with respect to the initiative of the intake meeting, there can be differences between institutions. Some invite the new student with a disability explicitly, while others expect the student to make contact. A few of the colleges and universities inform students with a disability of the supports when they apply. A student can report their disability in writing voluntarily. The information is passed on to a staff member who deals with it in confidence. They invite the student to an intake meeting. This can take place before the start of the year or at the start of the term. Meetings are always confidential. Understanding of ASS and respect for the student are necessary for a successful intake. Preparation increases the chances of success. In paragraph 4 of this chapter provides a format in which possible points of discussion for both the student and the intaker. The intaker has to be aware that the student can finds it difficult to talk about their disability. This can be because of shame, because of former experiences or the idea to ‘do it myself’. A protocol for the meeting gives clarity about arrangements/undertakings made. This protocol also optimizes the sounding out and handing over to other involved personnel within the institution. In the context of privacy, this information is only passed on to other staff if the student has given permission for this. (see paragraph 4). II The student registers(doesn’t register) for intakeOne can differentiate various situations:
III Study- and Career choiceThe deacon at second level plays a large role in the choice of study. It is advisable to visit open days. Students with ASS are well advised to make personal contact with the institution in which they are seriously interested. In every discussion about study choice, the issue of freedom to choose whatever study or career is always true, once you fulfill the entrance criteria. In a meeting about study choice the issue of possible financial and practical consequences can be discussed.
Reorientation of study or career choice Sometimes there are still problems after months or even years of study, or the student fails their exams. The student then loses their motivation. The process of choosing can begin anew, they can ask the study advisor, who has stood by them up till now and who knows the bottlenecks, for help and support. The student has the freedom to choose another mentor who suits his personality better. Based on experience learnt, a reorientation talk takes place about study and career choice. IV Conducting an intake meeting.With the help of a format both student and intaker can prepare themselves for holding a meeting. Suggestions for topics can be found in the appendix of this chapter. The intake meeting follows three phases, the orientation, inventory and the realization phase. During the orientation phase the student’s situation in relation to ASS is examined, as well as their previous school experiences and their social circumstances. During the inventory phase the study choice and expectations, supervision and bottlenecks are discussed. In the realization phase concrete arrangements are made about provisions, support and follow-up discussions. Intake is not a once off activity. The agreements which are arrived at about provisions and support should be seen as part of a growing contract. During the course of the study additions and amendments will regularly take place.
Communication tips Tips for the student
Tips for the Intaker
Protection of privacy In the course of the discussion confidential and personal matters will be discussed. The student does not have to give this information. The consequences of this is that he may not get the support he needs. In the context of protection of privacy confidential information such as medical reports, personal information must be handled very carefully. The intaker will state this clearly at the start of the discussion. It will also be clearly stated where the report on the discussion is kept and who has access to it. Without the student’s permission the intaker will not pass on any of the information received to others. At the request of or in consultation with the student, the intaker will make contact with other involved persons with regard to supports both within the course and outside the course. There is a code of conduct or privacy arrangement in all educational establishments which deals with this topic. V The right to supportsVarious rulings are applicable. In all cases the deacon is the link in relation to information and application. In most cases it is required to be in possession of a medical report. Extensive information can be found in www.handicap-studie.nl under the heading ‘my rights’. 04 From study obstacles to solutionsBased on various studying activities there are several solutions provided for obstacles forthcoming from studying with ASS. In particular the struggle to process information and interact socially. 1. Read up on lesson material 2. Attending lectures and making notes 3. Participating in workgroups, digesting information, presentation and working together in a team. 4. Making individual projects, papers and thesis 5. Doing oral exams, practical exams and written exams 6. work experience General tips for studentsStudying with ASS is not always the same and not every solution is suitable for a student. Sometimes it is only clear at a later stage to see what the practical use of particular solution is for the individual student at home or in the college. As a general rule it is useful to inform your teachers and fellow student about your functional obstacles and in relation to processing information and communication. Remember to inform them the best to communicate with you. Most students benefit from a 10 minutes talk with the leader every one or two weeks to discuss the progress and plan the next activities. If you find it hard to ask for help, please bring along someone you trust who can explain or arrange things for you. General tips for teachers and support staff.Students often feel the need for specific guidance and structure. Part of the solutions presented to the students are not stand alone solutions and are only effective when they are part of the overall guidance course. We recommend frequently reviewing the chosen solution for the particular problems in relation to processing information and see if it actually works. It is important for teachers and supporting staff to accept that processing information and communication disorder require particular adjustments from their part. After all, they are the ones who can provide the necessary support. In general, teachers and supporting staff are the ones who can ask the students what is the best way to communicate with them. Most of the time, the student can indicate what works for them. Most student benefit from a steering, pragmatic and business like approach. Be steering and directive in offering lesson material, tasks and instructions. Most students benefit from a 20 minutes meeting every one or two weeks with their teachers or supporting staff. It is good to let invite the students and let them take control. Plan the meetings on a fixed time of the day and fixed day of the week. To ask a number of concrete questions are the best. Discuss with the student a suitable study plan that you go by and take into account. How is the contact with other members of the work group. Do you have an overview of your activities and do you need further help or assistance. A student who is struggling to digest information requires a lot more extra effort. It is necessary to take that into account and a little break during the meetings is very welcome. The timing of handing in work by the student must suit the students’ capabilities. It is also important that the teacher or the supporting staff respect that a student with disabilities has reached their peak of independence. Teachers and supporting staff should show respect and acceptance at this stage. It is possible that teachers and supporting staff may find it quite difficult to build up a functional relationship with the ASS student. Teachers and supporting staff can always work together with or ask the support of experts in the ASS field and GGZ. Please refer to bbznederland.nl or Chapter 6 of this document. Obstacles while studyingProcessing information is a hard for ASS students. They find it is no so fast, very hard to distinguish the main subject from the sub-subjects, and it is hard to make abstracts. Too much information at a time causes problems and one requires good planning. Students are sensitive and distracted by lights and sounds. They are not very flexible and therefore are dependent on a clear structure and want to know what is expected from them. Students often have a strong interest (sometimes obsessive) in one particular subject and may overestimate themselves, in particular with the Asperger condition. Problems with processing information may lead to low social interactionNot picking up subtle signals, verbal as well as non-verbal. There is often a one direction communication and they may take up expressions literally. Sometimes they are annoyed out of the blue. It is easier for the student to take up a neutral standpoint. A combination of in-security and lack of affirmation and a feeling of im-perfectionism often leads tear of failure. This often results in fatigue and irritations. Coming in late for a lecture may lead to stress. 1 Tips for students – how to explore study materialActively interacting with the study material
Concentration during studying
Planing you study time.
Tips for Tutors and support staff about presentation of course material
2 Tips for students on attending lectures and making notesActive involvement at the lecture
Discuss clearly with your tutor what your needs are. Make agreements.
Plan your participation at lectures according to your ability to concentrate
Make arrangements about participation in compulsory lectures. Look for alternatives.
Tips about lecture provision for tutors or support staff
3 Tips for students taking part in work groups: processing the information, summarizing and making presentationsMake use of aids
Make arrangements with fellow students and your tutor about tasks. Write everything down: certainly communicate clearly about your own task.
Look for possible alternatives and discuss these with your tutor
Ask for help or extra guidance. If you find it difficult to ask for extra help or extra guidance take someone you trust with you so you can make your needs clear.
Tips for tutors or mentors for support of workgroups.
4 Tips for students about individual assignments, essays and papers.Bring structure yourself into the writing process.
Look for alternatives and discuss them with your tutor/mentor
Ask for help or extra guidance. If you find it difficult to ask for extra help or extra guidance take someone you trust with you so you can make your needs clear.
Tips for tutors and other support staff about assignments, papers and essays.
5 Tips for students about oral exams and practical assignments.Get organized in time.
Look for alternatives and discuss these with your tutor.
Tips for tutors/support staff about taking oral exams and doing practicals
Tip for students doing written exams.Get organized in time.
Look for alternatives and discuss these with your tutor.
Tips for tutors/support staff about taking written exams
7 Tips for students about practical work experienceOrganize in time.
Look for alternatives and discuss with work experience supervisor
Tips for work experience supervisors and tutors
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