Talking About Autism: Routines and Resistance to Change

Change is coming. The prospect of change is beginning to cast a shadow on our family’s life: my son is moving up to High School in September. Thomas has high functioning autism so he is generally resistant to change; his primary school and I have spent some time preparing him for this next step. We’ve talked about it, he’s visited the school on its open day, all his friends are going there and are talking about it. The high school is a ten minute walk away and he has been to after school clubs there in the past so he is familiar with the grounds and layout and has known for some years that this would be his next school. There is a specialist resource centre in the high school grounds so that even if he could not attend the mainstream school he would attend the centre, as have pupils from his primary school in the past. He is mentally prepared, as best as he can be.

Unfortunately the move is not going to be as smooth as we had hoped as the resource centre has just been re-designated a resource for children with physical disabilities and he is no longer eligible for a place there. We have to rethink our plans. In the meantime, we have discussed the situation with Tom so that we can get his preference for Plan B. He is adamant that he wants to go to the resource centre so he can stay in contact with his friends. He was expecting to go to the resource centre and now he faces the last few months of school worrying about where he will end up instead of looking forward to and preparing for the future. This makes me incredibly sad.

However, I don’t want to write a piece today about the trials of finding a suitable secondary school. My focus today is on the subject of change and how we handle it. I am not autistic but I believe I have certain traits that I recognise in Thomas. One of the ways I relate to my son is in the matter of change. I have never enjoyed or embraced change. Change has generally not been a good thing in my life, uprooting me and causing me to face issues or emotions I would rather ignore. I rarely instigate change myself and when I do it’s usually only after a great deal of agonising, planning and working up motivation. I need to know the course ahead or I become incredibly anxious and once I have a plan in place it’s hard for me to change course. I need time to process the implications of any change of plan: what actions the changes will require, how those changes will impact me, how I will feel and how I will be able to adapt. I might be able to process the change quite quickly, but my immediate reaction will always be negative and most likely anxious. I will say “no” to a change before I say “yes”, simply because it is not what I was expecting.

I know myself well enough now to realise that my resistance to change is based on fear of lack of control….it’s perfectionism, a lack of faith in myself and the goodness of others to let me be less than perfect

I know myself well enough now to realise that my resistance to change is based on fear of lack of control. It is caused by my doubt that I can handle the change. It is the fear of not being prepared; of not knowing what will happen; of not understanding; of not having the answers, believing I won’t have the experience or skill to meet what is coming. It is the fear of the new, of not being good at something I have not done before. It is a fear of failing, of disappointing others, of not meeting expectations and the pain of feeling like a failure. It’s perfectionism, a lack of faith in myself and the goodness of others to let me be less than perfect. It’s the fear of being seen to be weak and of feeling helpless. It’s an irrational fear caused by a perceived lack in myself.

The very basis of Tom’s autism, like my resistance to change, is the fear of not being in control

As I understand where the fear comes from I am able to use logic to talk myself out of resistance and anxiety. I may not like having to change my plans or accept a new idea but I can. However, this reflex anxious response has helped me to understand my son’s autism. The very basis of Tom’s autism, like my resistance to change, is the fear of not being in control. Like me, if he feels unequipped to handle a proposition he will resist it. Unlike me, he doesn’t have the experience, communication skills or confidence to assess how a change will affect him and deal with it. In his early years he was physically aggressive – he bit, scratched, head butted, lashed out, kicked and had tantrums because he couldn’t voice his frustration and fear. I realised early on that this behaviour was communication rather than “bad” behaviour; without fluent speech he was communicating the only way he could: physically. With early intervention of speech and language therapy and a lot of intensive work of my own, Thomas’ communication skills improved and his aggression died away. However, his resistance to change remained. Change can be as trivial as:

  • a new brand or new packaging of the food he eats
  • a different cup or plate to the one he usually uses
  • walking on the other side of the road on a familiar route
  • changing clothes according to temperature, ie shorts to long trousers and vice versa
  • having to wear a new pair of shoes
  • having to stop an activity and switch to a new one
  • getting his hair cut or changing his hairstyle
  • changing the wording of a “call and response” type game or a story that we frequently tell

Repetition and routines make Thomas feel safe

Repetition and routines make Thomas feel safe. For an example of how this impacts upon our life, you can read about our bed-time routine here. For example, Thomas will eat only a small range of food and only a certain number of brands. He can taste a differently branded sausage roll even if it looks exactly the same as his usual one and he will reject it. (And by rejecting it I mean throwing it out the open fire door of the dinner hall at school! Yes, he really was caught doing that once.) There are many other small ways that his rigid behaviour rules his (and our) lives and we have accepted that this is how he copes with the potential “threats” around him.

He expends a great deal of his brain power processing sensory input, which doesn’t leave a lot of time or space for the executive function-type stuff …. his mind is so busy perceiving and categorising input that he has to fall back on familiar routines to get through the day

The central question is why does he feel unsafe, unable to handle basic changes like new food or different clothes? I used to feel sad that my own son didn’t trust me to feed or clothe him until I realised that this was an instinctive reaction that he couldn’t control. Research and experience taught me that Tom expends a great deal of brain power processing sensory input, which doesn’t leave a lot of time or space for the executive function-type stuff like reasoning, reading a situation and drawing a conclusion from a range of detail, or socially relating and understanding other people. His mind is so busy perceiving and categorising input that he has to fall back on familiar routines to get through the day. Anything new threatens the status quo and pulls valuable resource from his brain and so he instinctively resists, sometimes strongly. It’s the case of the straw that broke the camel’s back, except he is permanently on the verge, just as someone who is under a great deal of stress will suddenly erupt over something relatively trivial.

Unfortunately, however much I try to keep things the same some things are outside of my control. Last week we had to slightly alter our route to school because of roadworks. Once upon a time this would have been a major issue for Tom but these days he has enough confidence and experience to know that crossing the road a little further on will not bring the sky down upon us. Nowadays my only real concern is managing the major changes from the normal routine, such as schools trips to London (read here), visits to stay with family, hospital appointments and unfamiliar procedures (read here) or changing school. I have tried two methods of change management:

Option A

  1. Introduce the issue a few days in advance, discussing it, answering any questions. Perhaps looking on the net for examples or reading social stories about the subject. Deal calmly with the inevitable anxiety or objections, discussing how Tom might feel or how he might handle the situation.
  2. Broach the subject again the day before the impending event. Discuss it again, playing up the positive aspects.
  3. Remind him in the morning of the day of the event. Play up the positives.
  4. Give him an hour’s warning before preparing for departure.
  5. Start preparing for departure.

Option B

  1. Don’t say anything until the day to avoid a whole bunch of questions and potential worry.
  2. Announce the event in the morning. Deal with the inevitable hearty objections.
  3. Give him an hour’s warning before preparing for departure. Deal with further objections.
  4. Start preparing for departure.

I have found option A to be most effective. While it may produce more questions and objections and it may cause Tom to worry about something for longer than I’d like, it does help him to prepare and come to terms with change. Now that he is older, he is able to reason better and has enough experience to know that he will be okay in most situations. In fact he often is excited about a forthcoming event. At this point, we come full circle, back to the issue of moving up to high school. I did everything I usually do: we discussed it with him, the school discussed it with him, his friends are talking about it. We visited the school on the open day, we talked about walking to school. I told him we’d applied for a place at the mainstream school and that we were applying for a place in the resource centre. We visited the resource centre on the school’s open day. I told him he had been offered a place in the mainstream school and I was attending the meeting to discuss his place at the resource centre. So far as he was concerned, he was excited and ready to move up in September.

Sadly, it has backfired because he is now adrift in a sea of anxiety, suddenly cut off from his planned future and not knowing what will happen to him, as are we all. It is one of life’s great ironies that even planned change can change! We will adjust and I will start preparing him again, as soon as I know where he has been offered a place. I have already started preparing him for the possibility that I may home-school him if we don’t find somewhere suitable locally, for I am not prepared to subject him to an hour’s journey to school and an hour’s journey back from school every day, knowing how tired he gets during the day. I have every confidence, however, that he will not only survive but cope admirably with whatever may come. Change may be a challenge but together we will overcome, as always.

Public domain picture by Alexas_Fotos on Pixabay.com

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One thought on “Talking About Autism: Routines and Resistance to Change

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  1. Just when you think it’s all figured out, Murphy’s Law laughs in your face. Story of my life! With your love & support his Lordship will make it past the rough spots. He’s already shown what a brave young man he is!

    Liked by 1 person

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