Autistic Spectrum Disorder is a complex, pervasive developmental disability, which seems to stem from a multi-faceted origin and causes disturbances in the brain. Estimates of prevalence vary greatly. Recent small scale, but intensive studies give higher numbers than earlier ones, this being due to the criteria for autistic disorders having been considerably widened over the years. The highest estimates for the whole spectrum, range from around 40 to around 90 per 10 000 births, but the true figures are still being investigated. ASD affects 4 times as many boys as girls and of all the developmental disorders, ASD is the most researched and validated syndrome.
Asperger Syndrome is a manifestation of autism found on the Autistic Spectrum. This condition presents with a more subtle display of difficulties, yet has enough distinct features to be classified separately.
An issue which sets the person with Asperger Syndrome apart from those affected by the more well known forms of autism, is that there are usually minimal learning disabilities, to the contrary, people with Asperger Syndrome often have average or even above average intelligence. Because of this factor, with the right support, these children can often be successfully integrated into mainstream education. Many adults with Asperger Syndrome do lead independent lives, whilst others will require lifelong supervision and services.
Research undertaken by Dr Christopher Gillberg (1991), implies that Asperger Syndrome affects 36 per 10 000 of people with Autistic Spectrum Disorder and interestingly, the ratio of boys to girls is 10:1, whereas with the other forms of autism, the ratio is 4:1.
Diagnosis and Assessment:
As with any form of Autistic Spectrum Disorder, there is no physical test available to confirm the suspected diagnosis. Due to the multifaceted nature of Asperger Syndrome, only a thorough and informed observation by a multidisciplinary team, well versed in the presentation of Asperger Syndrome and with reference to the International Classification of Diseases, 10th edition (ICD10,World Health Organisation 1992) and the Diagnostic and Statistical Manual, 4th edition (DSM IV, American Psychiatric Association 1994) can lead to an accurate diagnosis.
In 1989, Dr Christopher Gillberg formulated the following criteria for the possible diagnosis of Asperger Syndrome:-
1. Severe Impairment in Reciprocal Social Interaction (At least two of the following)
1. inability to interact with peers;
2. lack of desire to interact with peers;
3. lack of appreciation of social cues;
4. socially and emotionally inappropriate behaviour.
2. All-absorbing narrow interests (At least one of the following)
1. exclusion of other activities;
2. repetitive adherence;
3. more rote than meaning.
3. Imposition of routines and interests (At least one of the following)
1. on self, in aspects of life;
2. on others.
4. Speech and language problems (At least 3 of the following):
1. delayed development of speech;
2. superficially, perfect expressive language;
3. formal, pedantic language;
4. odd prosody, peculiar voice characteristics;
5. impairment of comprehension, including misinterpretations of literal/implied meanings;
5. Non-verbal communication problems (At least one of the following)
1. limited use of gestures;
2. clumsy/gauche body language;
3. limited facial expression;
4. inappropriate expression;
5. peculiar, stiff gaze.
6. Motor Clumsiness, poor performance on neuro developmental examination
All six criteria must be met for confirmation of diagnosis
As for all people on the Autistic Spectrum, those affected by Asperger Syndrome are most definitely affected by the “Triad of Impairments”, namely:-
1. Impairment in language and communication
2. Impairment in social interaction
3. Impairment in imagination and flexible thought processes
I. Language and Communication
People with Asperger Syndrome differ from those affected by “childhood autism” as defined by Leo Kanner, in that they usually have fewer problems with language, often presenting with a substantial vocabulary, but their speech is often pedantic and stereotyped in content.
On close observation, it will also be noted that even whilst their speech is fluent, there is minimal notice of the reaction from the person who they are talking to, nor interest in the verbal response given to them. In addition, there is a definite impediment in non-verbal communication skills.
Often speech seems to lack expression and tone differentiation and also the person with Asperger Syndrome, struggles to understand other people’s emphasis on words or altered tones, used to specifically convey a certain message.
The use or understanding of body language, facial expressions and gestures is impeded, resulting in their understanding of communication being very literal.
II. Social Interaction
The person with Asperger Syndrome will be noted to be socially insular and apparently not concerned about this issue. There is a lack of understanding regarding the emotional aspect of friendships. The person with Asperger Syndrome will want to establish friendships, but they will lack the ability to develop and sustain such relationships. Anxiety and tension increases with greater demands for social skills. An inability to read social cues is pronounced.
III. Imagination and flexibility of thought
Often you will come across most capable skills and an obsessive fascination in dealing with facts and figures, yet there is a poor, or absent understanding of abstract or jargon.
Due to the confusing presentation of abilities and the presence of a good intelligence and speech, the public often take it for granted that these people can understand abstract and commonly known jargon. A comment such as “I nearly died laughing” can cause great anxiety and fear for a person with Asperger Syndrome.
A strong rote memory is frequently noted, which is extremely beneficial and is one of the reasons these people do exceptionally well in subjects which focus on facts and figures.
But a resistance to change, an obsessive demand for the preservation of sameness and the strong adherence to repetitive activities, can adversely affect their progress in life.
There is usually an inability to be able to think and play creatively, as well as a problem in transferring skills from one environment to another.
“Theory of Mind” Impairment and “Mind Blindness”
When trying to modify and alter or modify the behaviours of a person with Asperger Syndrome, it is imperative to consider the “Theory of Mind” Impairment. Theory of Mind can be explained as one’s ability to be able to consider and understand other people’s
thoughts and feelings, as this skill plays a major role in our interaction with others. For the person with Asperger Syndrome, this skill is severely impeded, resulting in the following difficulties:-
1. inability to predict the possible behaviours of others, which can lead to the person with Asperger Syndrome developing a sense of insecurity and a resultant avoidance of people;
2. Not being able to comprehend the intentions of those around him, nor understanding the motivations of their actions;
3. A lack of understanding concerning their own emotions or the emotions of others. This can manifest as a lack of empathy, which is often not accepted or understood by the people within their social circle;
4. Poor comprehension of how one’s behaviour affects how others feel and think about you. This can lead to a lack of motivation to please and a lack of conscience;
5. Minimal understanding/concern regarding what people know or want to know and a defective ability to detect or react to their audience’s level of interest This can result in either, the person with Asperger Syndrome speaking endlessly on a subject providing excessive detail, or else providing minimal background material, but just launching into a complex verbal account of a subject that the audience has no knowledge of, or interest in;
6. Minimal understanding as to why their focus of attention must change, whether it be in a conversation or in a classroom setting etc. For instance, if the person with Asperger Syndrome is concentrating on a specific task or talking to you on a chosen topic and you want to move on to another task, or alter the topic of conversation;
7. Due to the impediment in the area of social interaction, there is often a lack of understanding as regards the need to “take turns” in conversation and allowing others to talk without interruption, or the need to take takes turns in the playground etc;
8. Inadequate understanding of the action of “pretending” and an inability to separate fact from fiction, or the ability to be deceitful, is often present.
All of the above, adversely affect the person’s ability to establish and maintain friendships. These areas of impediment also affect their ability to benefit from daily life, learning and teaching.
A certain amount of social skills can be “taught” to the person with Asperger Syndrome, but it is highly unlikely that these skills can ever be internalised naturally. Because of the “Mind Blindness” experienced by a person with Asperger Syndrome, the learning of these skills is extremely difficult and stressful, as it is not “factual”; it cannot be seen nor explained on paper. Also, it is difficult for the parents, friends, teachers etc. to teach these skills, which they never had to “learn” themselves.
Intervention strategies
To ensure that the individual with Asperger Syndrome reaches their full potential, it is important to identify their strengths & weaknesses, then build on these with effective intervention strategies:-
1. Remember that you will not be effective if you only focus on the superficial behaviours, without consideration being given to the Triad of Impairments and Mind Blindness;
2. There will need to be a large portion of time allocated to specifically teaching social skills, such as taking turns, standing in line, not interrupting conversations etc;
3. You will have to point out and emphasise to the person with Asperger Syndrome, the effects their behaviours and actions have on other people. You cannot take it for granted that is obvious to them. Also follow this up by guiding them towards changing their behaviour accordingly;
4. A person with Asperger Syndrome does not easily pick up cues from the context, so make sure your communication is clear and concise, so that it is fully understood by the recipient
5. Help the person with Asperger Syndrome to learn to identify emotions in other people, by encouraging awareness and understanding of facial expressions and gestures, and by teaching them the corresponding physical, visual and auditory cues;
6. Should you notice anxiety or inappropriate responses, then interpret and explain the situations to the person with Asperger Syndrome;
7. Due to the fixation on certain topics of interest, establish that the person is actually aware of the whole situation and that they have taken all the details into account;
8. Talk to siblings and peers and guide them as how to understand and accept the social interaction from the person with Asperger Syndrome;
9. Establish and be aware of the sources of rigid and/or compulsive behaviours and do not feed into them;
10. Anticipate what will cause anxiety and if possible remove these trigger points.
Communication
1. Maintain simple language and keep facial expressions and gestures to the minimum;
2. Remember to communicate with a person with Asperger Syndrome at their communication level, rather than at their language level;
3. Give one instruction at a time and wait for the person to respond;
4. Address the person by their name and try to establish eye contact before giving an instruction. This will ensure that you have their attention prior to the commencement of the communication;
5. Introduce visual cues to enhance communication;
6. Be patient and sympathetic to their efforts to improve communication skills. Provide copious amounts of reward for positive efforts to communicate effectively;
7. Teach the person with Asperger Syndrome “stock” replies to everyday possible interactions;
Social interaction
It must be remembered that this area of impediment, is the root of the majority of the problems experienced by a person with Asperger Syndrome. This individual is not anti-social, but rather, almost “asocial”.
1. Bear in mind that regardless of the level of their academic abilities, the person with Asperger Syndrome is socially immature;
2. Give the person with Asperger Syndrome the “space” they may need from time to time. Sometimes the ongoing onslaught of people around them and the demand for correct social interaction, may cause a great deal of stress, thus “Time-out” must be respected;
3. Change of staff, or new people/peers may cause anxiety. Be aware that the person with Asperger Syndrome may need extra time to get used to these new people. Let him/her initiate the contact in their own time, rather than introducing these new people into their space immediately and without their consent;
4. Make sure that those involved in the daily life of an individual with Asperger Syndrome, have a full understanding of this condition;
Behaviour
1. Try to ensure consistency and if change is to occur, give the person with Asperger Syndrome good and repeated warning and guidance, then introduce any changes gradually;
2. Use visual cues to reinforce expected behaviours;
3. You will find it extremely hard to stop compulsive behaviour In most cases this is a futile exercise, so rather try to find a way to turn this obsession into something positive. Their desire to engage in compulsive behaviour can be used as a “reward system”, in that if they cooperate with class work etc, they are then allowed 10 minutes free time when they may engage in compulsive behaviours without any interruption;
4. Entering a battle of wills with a person with Asperger Syndrome creates a no-win situation. Remember that their difficulties as regards negotiating skills, imagination and empathy, is a display of their “Mind Blindness”, not just pure stubbornness;
5. The usual form of calming a person who is very upset or anxious, is to hold them, or go close to them, offering verbal reassurance. For a person with Asperger Syndrome, this can actually be the worst thing possible, probably causing further irritation and anxiety. Rather give them their required space, but letting them know that you are concerned and want to help in whatever form they need;
6. To decrease inappropriate behaviours and responses, try to create an environment which offers clarity, consistency and routine. A busy, changing and unpredictable environment will cause anxiety and confusion for a person with Asperger Syndrome.
7. When analysing inappropriate behaviour, try to look at the situation through the eyes of the person with Asperger Syndrome. If you try to analyse the problem from your personal viewpoint, you will not be able to establish the true trigger points.
8. Generally in society, we pick up the unwritten rules, knowing that they can change from setting to setting. For a person with Asperger Syndrome, this is exceptionally difficult for them to understand. Therefore setting definite rules and explaining them fully, will offer the person with Asperger Syndrome, secure boundaries and thus minimise anxiety and inappropriate behaviours;
9. When you are faced with a period of challenging behaviours and difficulties, try not to lose sight of the positive factors and strengths of this person. If you start feeling that you are fighting a losing battle, stop and focus on the positive aspects of the person and how to build constructively on these points;
10. Talk to other people about the behavioural problems you may be experiencing with a person with Asperger Syndrome. Often two minds are better than one and an objective opinion can be very worthwhile;
11. It might be worth keeping a record of daily behaviour patterns. This may well show what the trigger points are, that increase anxiety and inappropriate behaviours;
12. As with any type of inappropriate behaviours, it is positive reinforcement, as opposed to punishment or negative input, which brings the best results. In the case of a person with Asperger Syndrome, for instance, by allowing them to have time for obsessive habits or “hobbies”, can be used as a reinforcer of a period of good behaviour.
INTERNATIONAL CONTACTS
It is worthwhile joining various international associations and thus obtaining their regular publications. These organisations provide additional excellent resource centres.
Below we have listed varying international organisations whom we find very informative and helpful:-
* National Autistic Society - United Kingdom
393 City Road. London EC1V 1NG. England - Tel: 0944 20 7833 2299 Fax: 0944 20 7833 9666 - Website: http://www.oneworld.org/autism_uk/ E-mail: nas@nas.org.uk. This society produces the following magazines / journals:-“Communication Magazine” which is published 3 times per year;“Connect Newsletter” which will be published 4 times a year; “Autism, The International Journal of Research and Practise” - co-published with Sage 4 times per year;“The autistic spectrum - a handbook” which is published on an annual basis.This organisation also has a comprehensive publications list, listing books, videos and tapes that are available for purchase.
* Autism Europe
Avenue E. Van Becelaere 26b. Bte 21. B-1170. Bruxelles Belgique. Tel: + 32 2 675 75 05 Fax: + 32 2 675 72 70 E-mail: autisme.europe@arcadis.be. Website: http://www.autismeurope.arc.be
* Autism Society of America
7910 Woodmont Avenue. Suite 650. BETHESDA. MD 20814 USA Tel: 091 800 328 8476. Fax: 091 301 657 0869 Website: http://www.autism-society.org/
* Autism Research Institute
This institute is headed by Dr. Bernard Rimland, Ph.D. and is a most interesting resource centre. Dr Rimland focuses on a wide variety of treatment methods and is a great believer in dietary and vitamin therapy. The Institute’s monthly journal “Autism Research International” makes for most thought provoking reading.4182 Adams Avenue. SAN DIEGO CA 92116. USA. Tel: 091 619 281 7165 Fax: 091 619 563 6840. Web site: http://www.autism.com/ari
* Autism Society of North Carolina
This organisation has an extensive list of publications. 505 Oberlin Road, Suite 230. Raleigh. NC 27605-1345. USA Tel: 091 919 743 0204. Fax: 091 919 743 0208. Web Page: www.autismsociety-nc.org
Recommended Publications:
1. Tony Attwood - Asperger’s Syndrome. A Guide for Parents and Professionals. This book covers the topic of Asperger Syndrome. Published by Jessica Kingsley Publishers, 1998.
2. Lorna Wing - Asperger Syndrome: A Clinical Account.
This book covers the topic of Asperger Syndrome from a more clinical viewpoint. Published by The Journal of Psychological Medicine, 1992.
3. Leicester City Council and Leicestershire County Council; Asperger Syndrome - practical strategies for the classroom. Published by the National Autistic Society. UK. ISBN 1 899280 01 4
4. Val Cumine, Julia Leach and Gill Stevenson. Asperger Syndrome - A Practical Guide for teachers Published by David Fulton Publishers. London. ISBN 1-85346-499-6
References
Material for this brochure has been taken from the above four recommended publications.
Reprinted by permission of The Autism Societe of South Africa Jill Stacey
Note: The listing of resources is given on an information only basis. It is not to be construed as an endorsement by ADHD-AUTISM Writter of any of the profesionals, treatments, opinions, publications or products offered by those mentioned above