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On the able2able website I just saw a call for bloggers about the subject of Asperger’s and Autism. Since I haven’t written a serious entry in a while, I’d like to seize the opportunity and write a serious article from a psychological point of view rather than from a parent’s or patient’s point of view. So my advice to parents whose child has just been diagnosed with Asperger’s or an Autism Spectrum Disorder:

1. Before anything else: Make sure the diagnosis is waterproof! Do not trust “hunches” or the “gut feeling” of a physician. As for any kind of mental illness or disorder there are certain defined criteria described in the “Diagnostic and Statistical Manual of Mental Disorders, Revision IV” (DSM-IV) published by the American Psychiatric Association and there are numerous standardized tests a qualified psychologist, psychoanalyst or psychiatrist (preferably specialising in children and adolescents) can use, along with physical, neurological tests, to determine whether the diagnosis is valid and how great the extent of the Disorder is. The extent of the testing sessions may vary on a case-by-case basis, so if you plan to have the diagnosis verified in a clinic, prepare for a short-term hospitalization of your child. Larger clinics usually have a pediatric ward in their psych-department which has mother-and-child rooms or parents-and-child rooms which allow one or both parents to stay with the child throughout the whole period of hospitalization.

2. The diagnosis is not the end, it’s the beginning. If the diagnosis has been validated by a professional you should have been told about the extent of the disorder on the autism scale, the actual type of disorder (Asperger’s/”high functionality level” Autism or “regular” Autism) and about means of therapy to improve your child’s capabilities. Do not aim for “normality”…the is no such thing als normality anyway, but aim for individual improvement relative to your child’s individual abilities. And keep in mind that development of children is hardly predicable…While in most cases of Asperger’s a high degree of functionality in terms of social interaction, education, finding and keeping a job etc. can be achieved, more severe cases of Autism Spectrum Disorders will leave the patients dependant on external help for the rest of their lives…as cynical as this may sound, you will not live forever, so your aim must never be to “be there” for your child indefinitely but rather help your child to lead a life on its own as far as this is possible within the boundaries of the disorder.

3. Learn to communicate on the digital level rather than on the analogue level. The distinction between analogue and digital levels of communication were defined by the psychologist Paul Watzlawick. The digital level of communication defines the pragmatic, literal content of a verbal message. The analogue level is the socio-emotional level of communication, the “context” or what is said “between the lines”. Everything you say can be considered a “speech act“, which can be a lot different from the digital content of the utterance. You might for example not ask a person to close the window or turn the heating up a little directly, but rather say “It’s cold in here.” On the digital level this is just a description of the environmental conditions. On the analogue level however this will be interpreted as asking for the conditions to be changed. Other speech acts which have no meaning other than social communication are such things as to greet people with “good morning” or “good afternoon”, not necessarily because you actually care how they are feeling, but rather because “this is what you do”. A good example is the greeting “how do you do?” which is answered with the same line without any of the people communicating actually stating how they are doing…it is just a ritual of greeting with no digital meaning whatsoever.
A common symptom of autism is a thing called “literalism”. People with Autism or Asperger’s have trouble communicating on the analogue level, some are completely incapable of understanding non-literal meanings. They will almost always take any expression literally, often not understanding the actual intended message. Hence a large part of the therapy involves teaching children and adults with Asperger’s or Autism how to interpret certain speech acts, enabling them to extend their social capabilities. This also applies for body language and facial expression, which are part of the analogue level of communication. People with Asperger’s or Autism usually have problems telling a happy face from an angry or sad one and their capabilities of interpreting body language are usually limited. While people without such a disorder just internalize these things in the process of their socialization, children with any of these conditons need to be taught all these things we consider “normal” or “socially acceptable behaviour”. This symptom is usually the most challenging, since deficiencies on the analogue level are often interpreted as “bad behaviour”, rudeness or even hostility, especially by children. So:

4. Keep your temper! If your child does not react to you as you would expect it to, this is usually because it could not understand your message. Not reacting to “good morning” is not rudeness or hostility – the child just does not see the point of responding to a description of how you find the morning. Also, do not expect the child to understand non-verbal requests or facial expression. Rather say “this made me angry” than just put on an angry face. Ask literal questions rather than use conventional expressions (“How are you feeling”, rather than “good morning”). Do not use irony, sarcasm or cynicism, since an understanding of such means of expression are far beyond the child’s abilities.
Do not interpret denial of communication as a sign of reject. Depending on the level of Autism, your child may not want to communicate at all, may not want to be touched by you or may not even want you to be near it. Accept that without feeling rejected. The child is unaware of this analogue message.

5. Do not force anything. A common form of therapy for Autism and Asperger’s in the last century used to be the “Festhaltetherapie” (holding therapy) by Dr. Jirina Prekop. The basic idea behind the “holding embrace” was that children with autism could be “taught to like” physical contact to people by forcefully(!) embracing them until they stopped resisting. Nowadays this method is no longer used (except by conservative traditionalists) in modern therapy since now the common understanding of Autism is a lot different. Psychologists now usually believe this method only teaches children to endure physical contact rather than to enjoy it and it is considered unethical. At least here in Germany (I don’t know about America) a number of lawsuits for physical abuse have successfully been filed against therapists still using Prekop’s form of therapy. There a patients who can tolerate physical touch, while others never get accustomed to it. There is no real way of “changing” this and the tolerance for physical contact varies on a case-by-case basis. Accept that autists and people with Asperger’s almost literally live in a different world. There is no way to “drag them out of it” and bring them to your worl. You only chance is to gain their trust so they allow you to be a part of theirs…and it is theirs to determine, how much importance you have in their world…like I said, do not take that personal. It does not mean your child rejects you, it’s just an autist’s way of interpreting the world.

6. It won’t “go away” over time. Certain personality disorders have a tendency to “burn out” over time (such als certain forms of Borderline Personality Disorder), but this does not apply for any disorder from the autism-spectrum, including Asperger’s. There is room for improvement, but depending on the degree of severity the symptoms will more or less stay the way they are. “High functionality” autists and people with Asperger’s may lern to “blend in” with society and function as society would expect them to, but this is also different in each individual case. There is no “cure” as Asperger’s and autism are not “diseases” or “illnesses” one can catch…

7. Stay away from clinical literature and Wikipedia! One of the most common effects we observe when laymen are confronted with clinical literature and other more or less reliable sources of information is that laymen can understand the statistical information provided along with predictions about the outcome of different disorders, but are (due to lack of clinical experience) unable to estimate the likelyhood of the various things they may have read. Usually, reading clinical literature will lead to disorientation rather than focus. Statistical data you cannot fully interpret will make you more afraid instead of helping you. If you have questions about your child, ask a professional to answer them based on the individual structure of your child. I won’t give you a single table or any figures here, because in real clinical life, anything has a possibility of 50 per cent – it’s either true or it is not…percentages of how likely it is for your individual child to develop symptom X or Y won’t help you as your child either has symptom X or Y, or it doesn’t…don’t read yourself into an outrage…
Another bad side-effect of reading clinical literature is the problem of projection. If you read about symptom X, chances are, you will start seeing this particular symptom in your child…not because it’s actually there, but because reading about it raised your awareness for it…this happens to everyone, even professionals…
The good approach is: Observe, and if you happen to see something “odd”, THEN ask about it…do not internalize a page from the DSM-IV – you’ll start seeing ghosts immediately…

Ok, so much for this subject for now. I hope, you will find some of the things I wrote helpful.

cd