The word 'obsessive' might make you think of things that are excessive, or maybe compulsive, or behaving in a way that is beyond what would be thought of as being reasonable and rational. We are using the term 'obsessive' here because it is well known and understood, and linked with certain behaviours. But as we will explain, the so called 'obsessive behaviours' of many children with CVI are far from excessive and compulsive, or unreasonable and irrational. In most cases children with CVI tend to develop these behaviours to help them make sense of their world, and to help them feel safe and secure.
...the so called 'obsessive behaviours' of many children with CVI are far from excessive and compulsive, or unreasonable and irrational.
'Obsessive' appearing behaviours in children with CVI we have come across include:
- Lining things up
- Insisting clothes are laid out in a certain place in a certain way
- Insisting food is arranged very specifically on the plate
- Refusal to try new foods
- Extreme reactions to changes to routine
- Refusal to engage in any way with certain people or unknown people
- Repetitive behaviours, like doing the same thing over and over
There are many links between obsessively appearing behaviours and the child with CVI appearing frightened, including sometimes apparently irrational. Please take a few minutes to also check the Frightened page if this is the case.
Changing 'Obsessive' Behaviours
Do not underestimate how anchored the 'obsessive' behaviour is likely to be, and whilst change may be needed or necessary, this must be planned very carefully. Get it wrong, and you may find that you are making the existing behaviour even more deeply rooted. If your child is happy and feels in control, that is a sign you are going in the right direction. Ensure change takes place at their pace, which may require the tiniest of baby steps and reinforcement many many times before you can move on further.
The following is a simple set of rules for bringing about change we have put together for non verbal children with CVI, based on successful approaches shared by parents, teachers, therapists and doctors. What ever you are planning to do, maybe introduce a new place, food, toy, person, tv programme - just quickly run through the stages (below), to make sure you have not accidentally skipped a step. It is very easy to do, and can mean the difference between happy successful learning, and those behaviours becoming more deeply rooted.
Learning New Things Happily
11 Steps - From your child...
- 1 PURPOSE What is it? Will it make me happier? Will it improve my life?
- 2 CHOOSE This may be hard for me. Please, only proceed if you think it's worth it for me?
- 3 UNDERSTAND Think of something I already know well that you can develop to add this new learning to.
- 4 REMEMBER I don't see, hear or understand as you do. How you do this needs to make sense in my world, which is different to yours, so...
- 5 PLAN Plan! Work out how to do this well for me, before you start.
- 6 CONTROL Ensure I am in control and know it, which means I can stop when I want to. How I can do that?
- 7 GO! How did I do? Only go ahead if I am either ok, better if I am happy or engaged and stop if I hate it.
- 8 REPEAT I may have to do this a lot of times but the more I do it the better I will get, and the more I will enjoy it.
- 9 DEVELOP Slowly, if I am happy, and take this further but only one step at a time.
- 10 LEARN I'm learning - I can do it! Because you came to my world, on my terms, I love it, thank you - what's next?
- 11 REFLECT Can we do this better next time? What did you work out or learn about how I learn? Tell people for me.
Learning New Things Happily
The same 11 Steps - for you, think...
- 1 PURPOSE What needs to be learnt? What purpose does this serve?
- 2 CHOOSE Is this is important? Only proceed if it is.
- 3 UNDERSTAND What part links to something your child already understands? You need to attach this new learning to something your child already knows well.
- 4 REMEMBER To stay inside the limits of your child's world, so...
- 5 PLAN Make a plan first! In your child's world. Break the plan down into individual little baby steps.
- 6 CONTROL How will your child be able to show if they do or do not like it?
- 7 GO! 1st Baby Step - Is it ok or too much? Follow your child's lead, based on their level of enjoyment and engagement. Review, reduce or repeat.
- 8 REPEAT As often as is enjoyed and needed. Follow your child's enjoyments as your guide.
- 9 DEVELOP 2nd Baby Step, but only if ready - your child in control, and your child happy, engaged, and ideally curious.
- 10 LEARN Congratulations, you have taught your child something new. You journeyed to their world where they learn.
- 11 REFLECT What have you learnt about how your child learns? Tell all others who spend time with your child.
Happy learning, for non verbal children with CVI.
To explain the obsessive appearing behaviours, we will switch to explaining from your child's perspective...
Do I sometimes, often or always...
Hate Routine Change?
- I like to know exactly what I am doing, what is expected of me, where I will be and who I will be with, and for these reasons my routines are extremely important to me, and if you change something, I might react strongly and resist. The reason is because the world makes most sense to me through my routines. Much of your world makes very little sense to me, nothing can be explained with words, so I learn through picking things up through routine. Change my routine and you take what I know away from me, without my consent.
- Please...I know we have a problem here, because if you never help me to develop new routines, then I will never learn anything new, and there will be loads of things I would love to do, that I will only be able to do if my routines evolve. Don't think about change. That is sudden. Think more along the lines of growth and development. Start with were I am, especially things I love, maybe the swings in a particular playground. Give the experience a name, maybe 'swings' spoken slowly and used lots of times when I am on the swing. There may be another park you think I will like better, maybe because it is quieter, but I have refused to go. When you want to try the other park, say the word 'swing' - it might take me a bit of time, but if you use the word when I am on the swing enough, hopefully I will connect it to the feeling that I love on the swing. If I resist, you will need to give me more time, please don't force me. I have very little control over my life. My resistance I show to change is me telling you that this is important to me, and that I might be frightened or worried. When I learn that both swings have the word 'swing', then the next time you want me to try a new park, and use the word 'swing' I will understand what you mean, even if I can never say the word.
Line Things Up
- I may be very particular about how things are set up, possibly in a straight line or in a very specific format. This may extend to how I like things organised around me. Maybe I like my cup always in a very particular place, or only want to sit in one chair and notice if it has been moved even a tiny bit.
- Please...this order is really important to me. I find it difficult to find things and reach for things with accuracy, and sometimes when things are different around me, I can't work out what or where they are, and it makes be feel very stressed, because I might be confused or feel like I could be hurt. Please don't mess up my stuff or let other people mess with it, the order might not seem important to you, but it makes me feel safe, and your changes make me feel unsafe (explained in more detail in Safe Places). If change is needed, maybe something isn't safe and needs changing, then gently introduce it over time, bit by bit, let me get used to each little change, I may reject them a few times to begin with though.
'Obsess' over certain things
- This could be a certain tv programme I watch over and over, or a certain toy I can't be without, or a single song and no other that will comfort me (see CVI Autism Blog 1 about a boy with CVI, who was obsessive about the colour purple).
- Please...there is a reason for this, go back in time and think where and when did this apparent obsession develop. It was not something I was born with, so at some point between birth and now, I developed this, and you know my life best so you are the best person who can answer this question. It is serving a purpose, but if it is stopping me from learning new things, then it is not helping me so much, but be very careful how you help guide me in new directions.
- I may be what is thought to be an obsessively picky eater, and refuse certain foods, or be very particular about how my food is organised, maybe only on a certain plate or in a certain order.
- Please...whatever I do, there is a reason. It may be that I don't like gravy, or I need each type of food to be separate from the other types. This is because I can't cope with visual crowding and a plate with compartments may be much easier. I need to eat, I may really enjoy eating, but in my way and on my terms. My health needs are important, so am I getting the nutrients I need to be healthy? If I am, does anything need to change? Think why? If I am not getting nutrients then what are the options? I may be extremely resistant to new foods even being near to me, let alone on the same plate, because I don't know what they are and this can be frightening. I may be even more resistant if you are expecting me to put something into my mouth and chew and swallow it. Do not force me. You will only make things worse. You may need professional advice here, but whether that is from a speech and language specialist, or maybe a dysphagia (swallowing) specialist, please remember their training does not include an understanding of CVI. They may have worked with autistic children and my behaviour may look autistic, but I have CVI, and you will need to explain that to them, as well as me. My food behaviours almost certainly arose from one or a combination of confusion (due to how I see the food), disgust (from a taste I did not like) and fear (due to things going wrong before).
These behaviours have developed for reasons, and as the parent you have the best knowledge to understand how and why they developed. Please take a few minutes to read the CVI Autism blog, because it shows a parent, like you, who knew a lot more than they realised, as you almost certainly do too. Where anything becomes obsessive, learning anything new sort of goes into hiding, almost like a hibernation. It is a tricky balancing act between respecting your child's behaviours attached to fears, and their need to learn. A sign of true success is when you child starts to become curious again, and with that, they are showing you that you have successfully coached them out of their hiding place and they feel safe to learn again.
So maybe don't think of these behaviours as obsessive. Instead, think that a part of you child's learning is in hibernation, on-pause, waiting for a time when the environment is safe, right and ripe again. As their parent you are the expert on them, and what they need, and you are gently coxing them out, keeping them safe, and showing them the joy of learning.
Your child's learning is hibernating until a time when the environment is safe, right and ripe - you are the best person to help reawaken their natural curiosity and desire to learn.
CVI Autism Blog 1 - explaining why a boy with CVI was thought to be 'obsessed' with the colour purple.
Gordon Dutton's Blog 15 (using small steps for development)