We often talk about cognitive disabilities and diagnosis like it was synonymous. Of course it isn’t. A diagnosis names some cognitive disabilities, but only if they lead to problems in everyday life. We also often describe the person with the disability as if it was a totally normal person if he or she hadn’t had the disability. Sometimes even in a way that make some parents believe that somebody can treat the disability away and get to the fully normal person behind. Of course that’s not the way it is either; living with a disability changes the development in many ways that makes personality develop differently that it would otherwise.
I think that the most interesting issue in this equation is the way personality and the disability plays together to form a person. We define personality in many ways. A modern way of looking at personality is that it is a bunch of tendencies to , think, feel, act and react that isn’t defined by abilities. We are different from each other in many ways that have nothing to do with intelligence, memory or looks. some have a hard time saying no to other people, even when they know that they should, others have difficulties saying yes. We have differing tendencies to cry when we see a cute kitten being hurt. And we differ from each other in how open we are towards new things. All of this we name personality.
One of the personality traits often seen as important (in both Jungs and Eysencks theories) is extroversion. Some are introvert. They think inside their own heads, not always eager to share their thoughts. The often like their own company the best and might avoid parties and other social gatherings. Others are extrovert. They have a harder time thinking on their own and like to discuss life decisions with others. They often like social situations and thrive in the spotlight.
Most of us are somewhere in between introvert and extrovert, and the further we deviate from the mean of extroversion the fewer we are. Thats what we call the normal distribution.
Most of us have no problems being introvert, extrovert or somewhere in between. It does not make our lives easier or more difficult, just different. Some very extrovert people use their extroversion in being actors or musicians, jobs where you need to be charismatic. Some introvert people thrive in tasks where they can work alone, maybe as scientists or writers. Most of us want something in between, where we get to meet other people during the day but without the need to focus on social situations all the time.
Having an introvert personality and autism at the same time can work quite nicely. The autism isn’t the problem it could have been because you might prefer to be alone. But autism and extrovert personality is quite difficult for people around the person to handle. If you are a person with Asperger’s syndrome and a very extrovert personality you are in constant need of contact with other people in order to feel that you exist. You have a hard time thinking on your own but like to talk about yourself and your problems all the time in order to manage everyday life. If you have autism, intellectual disabilities and an extrovert personality it becomes even more difficult. You might ask the same question all the time because you can’t handle being out of contact, but huge difficulties in maintaining contact. Or you might grab other people in unacceptable ways, frighten other people or pinch them, behaviors that guarantee that people react.
You can say that the extrovert personality amplify the disability. Difficulties in everyday life is the consequence of a combination of the disability and personality.
Yet a complicating factor is that if you are quite common regarding extroversion you are still often a little on either side of the absolute mean. You might be just a little more introvert than most, or just a little more extrovert than most. The two positions might be quite close on a good day. But if you are stressed it might change fast. Often the degree of extroversion or introversion is amplified by stress. If you are just a little on the extrovert side you might seek other’s attention a great deal more than usual, if you are just a little on the introvert side you might avoid other’s company more when stressed.
Because having autism often is associated with having a higher level of stress (as described, among others, by M. Grace Baron, who describes it as a lower stress threshold) people with autism traits often appear introvert or extrovert as opposed to something in between. That might be an advantage if you are on the introvert side, but a clear disadvantage if you are on the extrovert side.
An extrovert person with autism traits or the autistic phenotype has a huge need for social contact and huge social inadequacies. That is a poor combination. You seek other’s attention and confirmation all the time, but in ineffective and often irritating ways. If you are of normal intelligence you might tell too many bad jokes, stand a little too close or talk too much about your own interests. If you have intellectual disabilities you might seek affective confirmation by irritating other on purpose. When they get irritated they react. And reactions are affective contact.
The first time that i came upon the phenomenon of contact seeking behaviour I asked my colleagues what they would recommend in order to decrease the behavior. The most common answer I got was to ignore the behavior. If nobody reacted the behaviour would disappear. The answer is logic in a behavioristic fram of thought, where all behaviour is seen as a result of the person’s interaction with the context. But I soon realized that that it often led to more frenetic contact seeking, often by an increase in the behaviors we were trying to put out. I believe that the reason is that ignoring ignores the social need of the extrovert person. If the person’s social need isn’t met the person will increase the seeking of confirmation. That’s why it is of huge importance that staff doesn’t do what I call working with the back towards the person. We do that when we try to avoid contact with the person because he or she is considered irritating, thereby avoiding fulfilling the person’s social needs. When the person finds a way of getting us to react (maybe by turning over a glass of water, pinch us or asking a question) we react slow (hoping for somebody else to react first), but immediately turns our backs again. Which all makes for a lousy contact quality, never fulfilling the persons need. Example:
A person with autism an a moderate level of functioning seeks contact every day by asking: ”What’s for dinner?” The first time the person asks, staff replies: ”We’re having meat loaf”. Because the question generated an answer and a social contact the person tries again after a short time. But with the same question. The staff answer: ”I told you it is meat loaf”. After som time the question comes again. Now staff is irritated and say: ”You never shut up, do you? It’s still meat loaf!”
Staff answer the actual question without considering the function of the question. The person wants social interaction, and the more emotional the interaction is, the better. The more irritated staff becomes, the better the interaction becomes. Which makes the behaviour self enforcing. If the only proper social interaction the person gets is when he or she asks about dinner menus (because that question is one staff can’t not answer) it isn’t strange that the question becomes an everyday nuisance.
The best way to minimize the behaviour is a combination of not enforcing the behaviour we don’t want and at the same time make sure there is high quality social interaction in ways we initiate. But it takes creativity. Not answering the question of the dinner menu is not a good way to not enforce the question. Of course we answer it the first time it comes. The second time we answer by asking: ”Yes, what was it? Do you remember what we are having tonight?” The person will answer: ”Meat loaf!”
Then we ask: ”Do you like meat loaf?”
Now we are having a conversation. Not one of the poor quality that we used to have (question-answer, question-answer, question-answer) but a conversation of a much better quality. We are chatting!
Chatting wit a person with autism isn’t easy. We have to ask counterquestions, we have to comment, answer with humor and all the other social tricks we know to keep the conversation flowing. And we need to stop caring about content. That might be the most difficult. Often staff believes that every conversation with the service user need to be part of the educational framework. In my life mot conversations have absolutely no content. We talk to talk, to interact. If you have autism the need for the contentless conversation can be just as big, and for the extrovert person with autism a lot bigger than it is for most of us. But that conversation demands staff who can talk, laugh and keep the whole conversation within the, often limited, life world of the person. The sole goal has to be to make the person feel seen and confirmed.
Another trick is to make use of good emotional social activities. Running to see who is the fastest is a great social activity with proper emotional content. Massage, having fun together and a slight tease (if the person can handle and understad it) also. The idea is that by fulfilling the need for social interaction using good social activities the person might not need to seek social interaction by the use of irritating behavior.
A positive side effect is that the behaviour gets a lot less irritating if we participate in the interaction fully and with creativity and joy. If we try to avoid social interaction with the person every try to get us to interact will be irritating. If the social interactions are our initiatives they often become more interesting and rewarding to us. We might even begin to like the person. It is a lot easier to like an extrovert person than an introvert. The extrovert confirms our initiatives a lot better than the introvert.