The following is a letter I have just written that I shall be giving to my son’s teaching team next week. He has attended a mainstream school since the start of this year, prior to that he spent two years at a Special School. I think it is worth sharing on my blog, because it touches on issues relevant to all autistic children, and on the problematic issue of dealing with seemingly”non-compliant” behaviours. The only change I have made to the letter, is my son’s name; to protect his identity and privacy I have changed his name to “Joe.”
Joe can appear to be a non-compliant or stubborn child, but in my experience the non-compliance is almost always a reaction to something he can’t or hasn’t verbalised.
His autism means he struggles with communication, anxiety, social interactions, and understanding instructions (for example, because of his literalness). He also continues to have issues with physical fine motor, gross motor and general coordination skills, he has been diagnosed with a weak core area and weak ankles, he wears orthotics to correct the position of his feet which then affects his movement and gait.
These challenges are often masked because he is a smart child who has learnt to cope and hide many of these issues – often by avoiding the activities that highlight them. In the autism community we call this “passing:” It is a common tactic and significant issue for higher functioning autistic individuals, they “pass” as neurotypical by utilising strategies that hide but do not eliminate their struggles. It can be mentally and physically exhausting for them to pass every day, which can and does lead to burn out. The underlying challenges and issues are still there, but they aren’t been dealt with or expressed so the person may be considered more capable and less affected than they actually are. This issue impacts on adequate provision of support services too, and is a well-known and significant issue for the autism community.
When Joe says he doesn’t want to or won’t do something, it could be for any number of non-expressed reasons. In order to help him join-in and do as instructed, it is vital that someone makes the time and effort to figure out why he is saying no. Joe is not fundamentally a non-compliant child, quite the reverse; in my experience he is eager to please and to get praise (often too eager). So it is worth taking the time to figure out where the “no” is coming from – for his own mental and physical growth, to encourage his social communication, and to long-term increase his class participation. The short-term of asking each time why he says no, even though it may be time-consuming, is an important step in helping him towards a more interactive and compliant class experience in the future.
Two actual examples may help to illustrate the point.
Joe came home from school on Friday pale, weak, nauseous and with a fever. The first sign to me that he was unwell was not the physical symptoms themselves, but the fact that he was incredibly non-compliant to my requests that he wash his hands and get dressed as he usually would after school. When I took the time to talk to him and listen to him it became clear how sick he was, the non-compliance was just a marker to the issue. I asked him if he’d been OK at school, and he started crying while he told me what happened during “dancing.” He said that he felt like he was going to throw up during the dancing, and he kept trying to lie on the floor because he felt so bad, but the teacher kept telling him he had to join in and do the dancing. I asked him if he told the teacher he was feeling sick, and he looked very thoughtful for a while and said “no, I forgot.”
This is typical of Joe: He forgets or doesn’t know to fully communicate the information that people need to understand what he is doing. It is a classic and strong symptom of autism that they struggle to understand others’ perspectives; it is hard for Joe to understand the way we take for granted that the rest of the children do, that a teacher needs to be expressly told why he is doing (or not doing) something. He needs reminding and even prompting, this is all part of his educational requirements, and should be adequately supported to allow for the encouragement of this type of communication. If the teacher has too many students to deal with at the time, Joe needs more individualised support to facilitate the time and effort required to help him communicate better in class.
A second example may also help illustrate the issue. Joe had been told by me that he didn’t need to see the school dental nurse because he had his own dentist, and I had signed a form denying consent for him to see a school dental nurse anyway. The form was misplaced by a teacher, but regardless Joe knew he didn’t need to see the nurse and I had expressly told him that if anyone makes him go along, he can tell them that Mummy said no. Despite these clear instructions to him, when it came time for him to be taken to the dental nurse, he apparently simply told the teacher “I don’t have to.” Which was interpreted as “I don’t want to / I have a choice in the matter,” and he was made to do it anyway. Instead of assuming non-compliance – as with the dancing example above – the teacher should have asked more questions and made the effort to encourage Joe to communicate why he felt he didn’t have to. That way, he would have had the chance to be reminded to say what I told him, or to better express his reasons for not going along.
In such situations it may indeed turn out that Joe is simply being non-compliant, but that is not my principle experience with my son; he is not a fundamentally non-compliant person just for the sake of being difficult. He is almost always reacting to anxiety, fear, confusion, lack of information, illness, or something else unspoken. If no one makes the effort to figure out why he is being non-compliant, then it is impossible to figure out the appropriate response to the situation. For example, if he is ill he should be allowed to non-comply; if he is scared he should be reassured and given emotional support; if he is confused or has a lack of information he should be further informed and given more certainty and detailed instructions; if he is simply being non-compliant he should be reminded of authority figures and the importance of doing what is asked of him, etc.
The older and more skilled he becomes at communicating and performing tasks, the less intensive the extra support that will be needed. But he is only 8, has only been talking for 3 years as opposed to the typical 5 years experience of his peers, he has physical weaknesses and challenges that are literally hidden (in his shoes for example!), he was once so severely autistic that it was declared he’d be unlikely to ever speak in a sentence and would be dependent on us for the rest of his life. It needs to be kept in mind how hard it is for Joe to be “just like everyone else,” to “pass.” His autism is not all-consuming of who he is (though it once very much was), but just because it’s not always obvious doesn’t mean it isn’t there impacting on his brain and body every single day. He is an incredibly loving and good child, but if you ignore the impact autism is having on his communication and skills it is easy to see him as a “problem child.” He needs help to understand what is required of him and to do it, and he needs reminders though-out the day. The more time and effort that goes into this now, will mean less is gradually required over the years. If he is receiving inadequate support to allow the teacher to deal with him in the way he needs to flourish, then we need to review his support allocations now rather than later.