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  1. Autism Learning to think like an autistic person & Treatment by understanding

  2. Dr. Gerard J. Nijhof orthopedagogue / clinical psychologist PhD at the Free University, Amsterdam current occupation at Amsta, Amsterdam, NL: department for people with intellectual disabilities.

  3. Autism: three main theories Scientific research: three leading theories in the field of autism: • The theory concerning Executive Functioning • The theory concerning Central Coherence • The Theory of Mind

  4. 1. Executive Functioning Executive functions: • The ability to use adequate strategies in solving problems. This ability can be used in flexible ways in order to achieve a certain goal. • Problems in planning, dividing attention and suppressing impulses.

  5. 2. Central Coherence Normally information is interpreted taking into account the context of a certain situation. People with PDD have difficulties extracting meaning from the context of their daily lives. Persons with PDD show difficulties in making distinctions between details and the whole. They can show a fixation on one detail, but it is also possible that they try to focus on all details at once. This is dysfunctional in perceiving and dealing with the situation.

  6. 3. Theory of Mind The ability to take into account one’s own and other’s mental states in the understanding and prediction of behaviour… … attributing ideas and feelings to the other person… … serving as direction for one’s own response to the other person. By making a representation of the mental processes of others we can predict and understand the behaviour of other people.

  7. An executive problem

  8. Intellectual disability Occurrence of both intellectual disabilities and autism has an important impact on the manifestation of autism Intellectual disabilities cause a lack of cognitive compensation possibilities for persons with autism DSM-IV: approx. 75% of children with Autistic Disorder have intellectual disabilities. Nowadays the focus of attention lies more on the prevalence of PDD in people without intellectual disabilities.

  9. Someaspects of communication (1) • Problems with non verbal signals. • Facial expressions, gestures of hand and body. • The 'melody' of the spoken sentence is of less importance… no change in meaning by changes in melody. • Speech is staccato, a 'word-is-a-word', taking things literal. • Difficulties looking at a person. • At the same time listening to and looking at a person is problematic ('looking' or 'listening').

  10. Some aspects of communication (2) • Preference for gathering information using one sensory channel at a time. • Echolalia (repeating words of another person) • Is echolalia a functional phenomenon? • Immediate echolalia: a primitive way to take turn in the communication (high strain). • Postponed echolalia: sometimes a certain reflection is heard a couple of hours later.

  11. Some more peculiarities Perceiving objects is easier than perceiving people. Stability of objects versus moving people. Animals are more recognizable by their often fixed behavioural patterns. People with autism prefer predictable movements.

  12. Diagnostics Autism and Intellectual Disabilities: two different phenomena! It is important to differentiate between the symptoms of autism and the symptoms of ID. Consider the amount of cognitive compensation.

  13. Observation

  14. Disorder of the relationship Relationships are centered around common objects and common activities. Often: a remarkable ('strange') focus of affection... other things become important. Sometimes: a decrease in distinguishing human beings and material things from each other. Lower level of reciprocity.

  15. Marked motor phenomena Clumsy way of moving. Stereotypic way of moving. Extended and rich repertoire of stereotypic behaviours. The amount of stereotypic behaviours increases when intellectual disabilities are more severe. PDD is the strongest predisposing factor for stereotypic behaviour!

  16. Marked sensory phenomena Stuck in an early stage of development - with tasting, licking and touching. Primary senses will be used in attaining order to recognize the world (i.e. touching behaviours: go and touch). Often: enhanced hearing sensitivity. Often: persons with autism pushing their earlobes… sometimes they shut themselves off for all kinds of noises, sometimes they are actively regulating the noises around them. Marked tiredness of impressions.

  17. Resistance to change (1) For an autistic person autism can be functional to a certain degree. Desire of sameness in many domains of life. One is aimed at a fixed sequence of occurences. Autistic persons are most happy when nothing is changing. Often autistic persons have a fixed place for their objects.

  18. Resistance to change (2) Autistic persons use 'mark points' to understand the world. Important: preventing the occurrence of a neurotic structure in the treatment. Structure can be helpful in creating predictability in the beginning of the treatment, but later on it is recommendable to achieve variability. Some persons with autism can be quite excessive in their desire to put things in a certain order.

  19. Are there variations in thedegree of autism? (1) In practice often variations in the degree of autism can be seen. We observed variations in the degree of autism shown through the day. We suppose the existence of periodical variations in the degree of autism. It seems there are periods with "low autism" and periods with "high autism". This theory is put into practice in Amsterdam. Further scientific research has to be done in this field.

  20. …Variations? (2) Treatment appointments: very often appointments concern the structure of the day. It seems everything has its own time and place. In the case of "high autism" the number of treatment sessions should be increased (… need for more help). In the case of "low autism" the appointment schedule often is too rigid (… 'they can do it themselves'). The appointments should be scheduled along the manifested fluctuations in the degree of autism.

  21. …Variations? (3) Looking at fluctuations/variations is a new and helpful way of looking at the daily practice. For best treatment practice signal maps are created - this is done in the case of "low autism" as well as in the case of "high autism". The recorded signals are individual - signals can point to the way stereotyped movements are expressed, to the words that are used, etc. More scientific research is needed to found these findings into formal theory.

  22. Types of social impairment Aloof group: not alert, introvert, not reacting. Passive group: open for contact, no initiative in making contact. Active but Odd group: spontaneous people, but the expressions often are strange and in a clinging way. Overformal, stilted group: people clumsy in movements, excessive polite and formal.

  23. Repetitive behaviour Classes A: Facial expression (19 distinctive behavioural elements) B: Position/Movement of the head (24 distinctive behavioural elements) C: Looking/looking at (11 distinctive behavioural elements) D: Sound (15 distinctive behavioural elements) E: Gesture of hand/arm (44 distinctive behavioural elements) F: Gesture of foot/leg (21 distinctive behavioural elements) G: Posture/movement of the body (15 distinctive behavioural elements) F: Locomotion (19 distinctive behavioural elements)

  24. Factors of repetitive behaviour Seven distinguished factors (factor analysis): 1. Sudden movements, such as hands/arms extended, waving of hands or arms, clapping of hands, bending down, trembling of body, and posture changes. Outbursts of repeated sounds, often alternated with a fixed stare or mirroring. 2. Rhythmical movements, such as nodding of the head, shaking of the head, swinging of the body, going to and fro, turning around. Also sound patterns from mouth and throat. 3. Movement of fingers, and looking (probably at the fingers), with no movements of the eyes. This is combined with movements in the region of the mouth. 4. Walking in circles, combined with glances and looking. 5. Manipulating own body, with special positions of the head, ­no arranging of objects. 6. Manipulating objects, also contact of the head with objects. 7. Quick movements of the eye. Also movements of the mouth and movements in the vicinity of the mouth.

  25. Functions of repetitive behaviour (1)(stereotyped behaviour) Delphi procedure with experts: repetitive behaviour conveys an intent to: 1. Restore or maintain situational equality This behaviour serves to restore or maintain an established situation through acts such as arranging objects or putting them in certain places. 2. Aim to control one's surroundings This behaviour involves watching and keeping an eye on the situation. In extreme cases it may even consist of obtaining one's own space or territory. 3. Achieve predictability, security or safety Examples include turning away, seeking isolation, reverting to, or approaching familiar or trusted persons, routines or patterns. 4. Aim to control tension resulting from a negative experience with certain stimuli This behaviour includes fear reduction in cases of social or existential fear. Fixation-like, panic-driven reactions, such as clutching (tightly), beating oneself, pinching. Also: isolating oneself by 'getting oneself stuck in', running away, 'rigid movements', mannerisms, aggression, auto-aggres­sion, screaming, yelling forcefully. Extreme motor restles­sness. 5. Aim to control tension resulting from a positive experience with certain stimuli

  26. Functions of repetitive behaviour (2) 6. Focus on a familiar sequence of events Social, sensory and physiological aspects may come into play. 7. Terminate an experience involving a void or a feeling of deprivation This function is rated on the basis of activities, including self-stimulation, stereotypical acts, drawing attention (possibly by force), that characterize a void or boredom. Such activities may result from internal and external stimuli. 8. Stimulate oneself in pleasurable ways • Stimulate oneself in unpleasurable ways 10. Express negative emotions The repetitive behaviour conveys negative (i.e. unpleasant) feelings. While this message may not be clear from individual acts, it emerges from the combination of behaviour elements or from their relation to the context. 11. Express positive emotions The repetitive behaviour conveys positive (i.e. pleasant) feelings. While this message may not be clear from individual acts, it emerges from the combination of behaviour elements or from their relation to the context. 12. Aim to establish human contact The repetitive behaviour conveys the player's desire to establish contact with a person in the sense of: wanting to be with this individual, trying to capture his or her attention, and the like.

  27. Functions of repetitive behaviour (3) 13. Aim to influence another person The repetitive behaviour conveys the player's desire to establish contact with a person in the sense of: wanting this individual to do something (to initiate or terminate an operation). 14. The repetitive behaviour does not indicate any function This behaviour involves being imprisoned by ..., being sucked away by ..., getting lost in ..., which becomes an end in itself.

  28. Treatment (1) Important: getting a grasp in some way of the autistic disorder So to say: one should learn to think like an autistic person. Prevalence of intellectual disabilities means less possibilities to compensate. This often means people are inclined to a more 'primitive‘ behaviour (aggression, etc.). Very important: the creation of predictability. Treatment setting: making the world conveniently arranged, giving support to understand the world.

  29. Treatment (2) First law in the treatment of persons with autism: only one thing at the same time! Deal with only one subject at a time. Explain what is actually going on. Use one sensory channel at the same time. You can use all senses separately, but not at the same time!

  30. Treatment (3) Important: many persons with PDD do not use non-verbal communication! Sometimes it is very difficult to understand present non verbal communication. Medication is applied on the basis of symptoms. Stereotypical behaviour (i.e. repetitive behaviour) contain a communicative value which can be used to assess the degree of autism. On the basis of observation signal maps can be drawn up recording the degree of autism ("high" versus "low" autism), which can serve for best treatment practice.

  31. Treatment (4) Addressing present skills… taking into account the Executive, Central Coherence and Theory of Mind problems. It is important to understand these problems and to give support based on this understanding. Extending the behaviour repertoire by training. This should be done by developing a clear support program for specific problematic situations. Common objects and common activities are important. Social feelings are often concentrated around these items. Recognition: emotions and the specific ways in which they are expressed, including specific emotional topics.

  32. Treatment practice: results • Reduction of behavioural problems. • Expression of more authentic behaviour. • Increase in the amount of behaviour flexibility. • Decrease in the amount of aggression. • Decrease of anxiety levels. (results concluded from staff reports)

  33. Autism and visual habits (1) Risk: fixating on only one detail in the visual field. Some people with PDD are too anxious to fixate on a detail. Looking with eyes wide open - no blinking, completely obsessed. Looking straight at a person, without noticing the social context.

  34. Autism and visual habits (2) Sometimes: increasing visual fixation with increasing degrees of autism. This is inevitable for the person with autism ('it happens to him'). Sometimes: visual fixation serves as a mean to concentrate or for relaxation purposes. Recognizing objects, situations, persons: a heavy working process for the autistic person. The time span between looking at and recognition may sometimes be the cause of severe traffic problems. The delay in understanding is one of the origins of anxiety.

  35. Computer aided support Using sign language by the deaf persons compares to using the computer by persons with PDD. The computer facilitates the possibilities to act and react in one's own way, on one's own time, with the contextual situation narrowed down to the monitor of the computer. For people with both ID and PDD the computer can also be an effective communication instrument.

  36. Language disorders (1) Many persons with both PDD and ID do not communicate by means of language. For some persons it may be true that their need to communicate is very small. Frequently the nature of the communication can be characterized as 'only' instrumental. Much of the language concerns things. The expression of feelings and thoughts is much more difficult. The choice of words is based on concreteness.

  37. Language disorders (2) • Many times the pronunciation of words can be characterized as monotonic, sometimes almost staccato-like. • The connotation may be different. • Neologisms: special and idiosyncratic words for own thoughts and images. • Lack of understanding that other people do not comprehend what they are talking about.

  38. Language disorders (3) • Idiosyncratic use of language. • Limited non verbal communication. • Comprehension of language: literal (a word is a word). • Jokes are incomprehensible. A joke is considered funny if it is well known and has a predictable course.

  39. Extreme illogical fears • Children can have many illogical fears. • Adult persons show more often panic attacks (related to specific situations).

  40. This lecture is based on my own research and practical experience and on the research of many others of whom I specially mention prof. dr. Berckelaer Onnes (University Leiden, the Netherlands).

  41. Thank you for your attention