Autism / ASD - Problems with change

My little boy is a creature of habit, he likes things to be as they should, each and every day.

He likes a bit of routine in his life, and we all usually stick to this routine because it makes his life a little bit easier, and less stressful.

He doesn't have rigid, set, to-the-minute routines, they are a little more relaxed, but they are routines non the less. And while with a lot of persuasion, and reassurance, an unexpected change in his routine is usually tolerated, you notice his anxiety levels rise considerably because of it.

On a usual day we get up, have breakfast and get dressed before heading for the school bus. He then has school, and then I pick him up again in the afternoon. Once home from school he likes to spend most of his afternoon pottering around the house, doing something 'special interest' related. While it may seem like he has a relatively unstructured afternoon, and I suppose he does in a way, that is his routine. If he comes home from school, expecting that he is going to read about minecraft or watch minecraft related videos on the pad and I ask him to come out with me and Caitlin, things can become tense.

This is why we find our visual schedule so useful. When he gets home from school, we can put some activities up on his schedule, including activities that he may have become distressed about, had they just been announced to him. Because he is adding the activities to the schedule, he feels like he his controlling what he is doing. This doesn't always work, but it usually softens the blow of a routine change.

Obviously there are times when a quick change cannot be avoided, which can be quite stressful for Neil. Like I said above, you can usually get him to go along with the change, but you can see the effects. The anxiety can manifest in different ways, more prominent tics, swaying, disturbed sleep, and at worst a meltdown, although thankfully we don't get too many of those. His little autism quirks definitely become more noticeable when a change has stressed him.

For example, on Monday it was Neil's first day back to school after the Easter holidays. He usually takes the school bus to school, which picks him up at the top our street. There are quite a lot of children in our village at the school, and so there are two buses on the same route. The first bus arrived, and the majority of children get on to it. Ten minutes later, the bus that usually picks up Neil had not arrived, so I took him in to the house to phone the school. He was getting very anxious about this and kept asking where the bus was. I told him we would have to take Granda's car to school that day, and he said OK. I could tell he was stressed about the whole thing as he was swaying from side to side, and his vocal tics became louder and more frequent. He was like that for the rest of the day, despite the remainder of the day being normal.

Ever since he started school in September, we've had the same morning routine. It is always me who takes him for the bus, and he has a little handshaking routine with his daddy when he leaves the house. Yesterday, for the first time, this routine had to be changed, and he really didn't take it well.

I was away on a trip to England for work, and had to leave the house at 6.30. This meant his daddy had to do the school run. Neil started crying at the breakfast table and was totally thrown off. I don't think he was particularly upset that I was gone, it was just such a big change to his normal morning that he couldn't handle it, despite a week of me preparing him and telling him what would be happening. It breaks my heart! I phoned home when I landed in England, and my husband told me about the morning and I felt so guilty for doing that to him.

It's inevitable sometimes though, that things will change. I may start looking in to relaxation techniques to help him with his anxiety when something like this occurs.


I used to find it frustrating, not being able to be spontaneous, to be able to just say "hey, it's a nice afternoon, lets go for a picnic", I belived the most fun was had in just doing something random and unplanned. Now though, I enjoy our routine. Seeing how happy and relaxed Neil can be when he's in a familiar environment, with his own routine in place, and I have learned that having to plan in advance doesn't take the fun out of things.

And while it may be difficult for some people to understand how small, seemingly insignificant changes can create so much upset, I'm sure most of you will agree with me that it is comforting to know what's going to happen next, fear of the unknown can create anxiety for everyone, not just those with autism/ asd. 

I'd love to hear your thoughts and experiences. Do you have any relaxation tips for helping to deal with anxiety?
Does your child struggle with change, and how do you help or overcome this?

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18 comments:

  1. I've just blogged about ASD and anxiety, my second son has ASD, ADHD and other complex health issues. Great post! #Autismawareness #BlogClub http://musingssahm.blogspot.co.uk/2014/05/combat-or-survival-mode.html

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    1. Thanks, I had a look at your post, I loved his observation!

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  2. I don't have any advice I'm afraid as I haven't had to deal with autism or anxiety but I hope you find some relaxation techniques that will help xx

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  3. I found this interesting to read as I don't have any experience in this area, so can't help I'm afraid. But it sounds like you're doing a great job (and finding time to blog about it too!) Visiting fo rthe first time from #LAB blog club

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    1. Thanks. I do enjoy my blogging on an evening, helps me clear my head to write about things!

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  4. On a personal level I find as an adult mindfulness training is helpful, relaxing and reduces my own anxiety, it sounds like your visual schedule is spot on, does he enjoy getting out for a walk? I find that relaxing :) (just saw you're from the NE originally, hi from Gateshead!)

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    1. He's not big on walking, he cried that his legs are sore. We're not yet sure if this is just a way to get out of walking, or if there are problems with his muscles or joints or anything. I love walking though, I find it pretty relaxing too x

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  5. I don't have any advice as far as anxiety is concerned but my daughter was given some relaxation techniques to help her deal with pain. A lot of it was to make her concentrate on something else, I don't have much experience with ASD but they may help Neil disengage from his anxiety.
    One exercise was to get her to close her eyes, breathe in real deep through the nose and imagine she is smelling a flower then to blow out through the mouth as if she was blowing out a candle and keep going till she is calmer.
    Another was to slow the breathing down, in through nose out through mouth and imagine something fun that she enjoys doing, or something or somewhere that makes her feel safe.
    I know it wasn't quite what you were asking for but I hope it gives you some ideas that might help x #pocolo

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    1. Thank you so much for the advice, I really appreciate it. I will try those with him, and see how it goes x

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  6. I am sorry I don't have any advice but I do think that you have to trust your feelings and judgement. You know your son better than anyone.

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  7. I'm afraid I don't have any advice but what you are doing sounds amazing.
    I looked after a lovely boy with autism and we also had a visual to do boars and we also had one as a diary so he had pictures of who was caring for him on each day and pictures of school, swimming etc

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    1. Oh a little visual diary sounds good x

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  8. I use Relax Kids CD's with my two boys and they really help. I hope you find a solution for you

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    1. Sounds good, I'll have a look for some x

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  9. My two do struggle to some extent with a lack of routine and it can be difficult. It sounds like you are doing a great job.

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  10. I have zero experience in this area but it sounds like you guys are doing an amazing job. My friends son was recently diagnosed with autism and she has him in behavioral classes and more which really seem to be helping. Thanks so much for linking up! #MMWBH x

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