Autism

1. Autism Thinking like an autistic person & Guidance through understanding

2. Dr. Gerard J. Nijhof orthopedagogue / clinical psychologist PhD at the Free University (VU), Amsterdam Amsta, Amsterdam: department for people with intellectual disabilities. g.nijhof@amsta.nl

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

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

5. 2. Central Coherence Normally, information is interpreted taking into account the context of a certain situation. People with PDD have difficulties doing so. Persons with PDD are having trouble making distinction between details and the whole They focus on one detail in particular or try to focus on all details at the same time. This is dysfunctional in perceiving and coping with situations.

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 behavior… … 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 behavior of other people.

7. An executive problem

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

9. Someaspects of communication (1) • Difficulties 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 literally. • 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 only. • Echolalia (repeating words of another person) • Is echolalia a functional phenomenon? • Immediate echolalia: a primitive way to take your 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 more easy than perceiving people. Stability of objects versus people in motion. Animals are more recognizable as they often show fixed behavioral 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. Keep in mind the amount of cognitive compensation.

13. Observation

14. Disorder in relationships Relationships are centered around common objects and common activities. Often a remarkable ('strange') focus of affection... other things become important. Sometimes a decrease being able to distinguish between human beings and material things. Lower level of reciprocity.

15. Marked motorical phenomena Clumsy way of movement. Stereotypical way of movement. Extended and rich repertoire of stereotypic behavior. The amount of stereotypic behaviour 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 are used to recognize the world (i.e. touching behavior: 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 upto 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 variations in the degree of autism can often be seen. We have observed variations in the degree of autism as shown through the day. We suppose there may exists periodical variation 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, the way words 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 are clumsy in the way they move, 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: understanding the way a person with an autistic disorder is thinking. So to say: one should learn to think like an autistic person. Prevalence of intellectual disabilities means there are less possibilities for compensation. This often means people are inclined to more 'primitive‘ behavior (aggression, etc.). Very important: creation of predictability. Treatment setting: arranging the world in a convenient way, giving support to understand the world.

29. Treatment (2) First law in treating persons with autism: only one thing at the time! Deal with one subject at a time only. Explain what is actually going on. Use one sensory channel at the 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 for a person with PDD to understand present non verbal communication. Medication is applied on the occurrence of symptoms. Stereotypical behavior (i.e. repetitive behavior) 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 behavior 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 feeling is often concentrated around these items. Recognition: emotions and the specific way in which these are expressed, including different 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 level. (results concluded from staff reports)

33. Autism and visual habits (1) Risk: fixating on one detail in the visual field only. Some people with PDD are 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 means to concentrate or for relaxation purposes. Recognizing objects, situations, persons: a heavy working process for the autistic person. The timespan between looking at and recognition may sometimes cause problems in coping with traffic. The delay in understanding is one of the origins of anxiety.

35. Computer aided support The use of sign language by deaf people compares to the use of computers by people with PDD. The computer facilitates the possibility 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 effective in communication.

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 for communication is very limited. Frequently the nature of communication can be characterized as instrumental 'only’. Much of the language concerns things. The expression of feelings and thoughts is much more difficult.

37. Language disorders (2) • Often pronunciation of words can be characterized as monotonic, 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. • Adults more often show panic attacks (related to specific situations).

40. This lecture is on the one hand based on my own research and practical experience and on the other hand on the research of many others.

41. Thank you for your attention