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Demand avoidant or self advocacy

(20 Posts)
Claw001 Wed 16-Jan-19 20:38:26

I’ve just had an OT report, part of which describes my son as demand avoid.

In context it was under the provision section of her report, stating she did not know how a particular intervention was going to be implemented as my sons engagement in interventions is incredibly inconsistent (in school) and he is demand avoidant.

In general, my son will not use strategies which he feels make him stand out or look ‘different’

This particular strategy was in regard to learning to touch type. My son basically said no thanks, I’m fine and getting by using my 2 fingers to type.

I usually encourage my son to find strategies which he finds helpful and work for him. I did not realise this would be regarded as demand avoidant.

Is this demand avoidant or self advocacy?

Nay08 Wed 16-Jan-19 21:47:27

Demand avoidance usually comes along with autism. You will find it can cause extreme anxiety, behaviours that challenge and some extreme behaviours such as destruction of property and hitting out at others. If your DS is not exhibiting these behaviours but rather just wants to do his own thing, id say its more about building his own independence and learning what works for him. His is trying to be his own advocate and learn himself. May i ask what age he is? As it sounds like hes at an age where regardless of what needs he may or may not have, where he is trying to push boundaries and stand on his own two feet.

Claw001 Wed 16-Jan-19 22:16:19

Sorry I should have added he has Autism. He is 14.

It’s the first time any expert has mentioned demand avoidant. My son is passive, very quiet, well behaved, etc. I think this is why I’m a bit confused at the comment. Or maybe I haven’t really understood demand avoidant.

He does suffer with extreme anxiety and will avoid situations he finds difficult, if possible. However, never in a disruptive way. He would usually ‘tolerate’ whatever was being asked and direct his anxiety inwards. Which is why I’ve been encouraging him to self advocate!

I suppose I associate demand avoidance with disruptive behaviour. Maybe this is inaccurate?

OneInEight Thu 17-Jan-19 07:36:28

I think this is demand avoidance because he is avoiding doing something he feels he will find difficult (either through embarassment or because he physically can't). ds1 and ds2 will both try to avoid things they find difficult or anxiety making. I am pretty much a master of this too!. It is very difficult to find the right balance between helping them learn to accept going a bit out of their comfort zone and letting them decide what they can cope with.

Claw001 Thu 17-Jan-19 08:18:00

Thanks One. I’ve just been reading about demand avoidant profile. I have to say it fits my sons profile like a glove! Apart from impulse, outbursts or anger. My son directs it inward, Maybe it’s not so noticeable due to this.

Maybe more noticeable in school too as there are more demands there. When younger ds was more ‘explosive’ and refused more, however I learned to manage this behaviour by giving him choices and some control and lowing demands, picking my battles etc. Or maybe ds has learned to mask his behaviour better.

Any suggestions on encouraging ds to accept strategies, without damaging his autonomy, more than welcome?!

Nay08 Fri 18-Jan-19 17:26:09

With people with demand avoidance, the trick is to not place demands or commands upon them. You have to find ways of phrasing things so it isnt a question or a demand upon them. Instead of saying i would like you to do this, or shall we do this.. you can always say.. DS i bet you cant do this, or DS can you think of this... etc. You need to put it in such a way that he thinks its his idea or his process rather than meeting the needs of someone else. Demand avoidance isnt because they dont want to do it or they dont like it etc, its because they feel extreme anxiety in processing that command.
For example, asking them to put on a top, or to complete that piece of schoolwork. To us, thats straight forward. But if you break it down.. choosing a top.. first, look at the weather, what top is suitable? Then where are you going... is that top suitable? Then, do i like that top? Then, does it match with the other items ive chosen to wear. Schoolwork.. first, i need to find a pen or pencil then i need to find that place in the workbook. I need somewhere quiet where i can process my internal thoughts as well as my thoughts about trying to complete this work. Then i need to sit and try and concentrate on the work, then i need to ensure im writing the correct thing... etc.
Once you break down commands / questions etc,, you realise that nothing is straight forward and it takes a lot out on people to try and work out what to do how to do it etc.
Try making things into a game, praise good efforts and completion, and avoid negativity when it doesnt go well. Instead focus on something they did well. And if you see any behaviour that is resembling anxiety, move away from that and go back to it later.
Hope that helps!

Claw001 Fri 18-Jan-19 22:50:44

Nay thank you very much, appreciated. Helping me make sense of this!

It’s strange I kind of did as you describe from an early age, without actually recognising it was a strategy! For example ‘get dressed’....no! Ok, are you going to put on your t-shirt or trousers first. Or do you you want some orange juice...no! Ok, do you want orange and blackcurrant? Kind of thing! I have 2 older kids too (no disabilities) did it with them all!

Exactly that,it’s your idea! I just planted the seed! Humour, it’s a game, let’s see how many toys you can get in the box, distraction etc, is how I did it with all my kids! Maybe that’s why I’ve never noticed the demand avoidant behaviour as much?

It all makes so much more sense now! My son has so many school related anxieties, due to demands! He has ‘breakdowns’, self harms (quietly) etc. Refuses to use any strategies in school, feels forced etc

It’s the way they are presenting it, isn’t it? It’s their idea!

Claw001 Fri 18-Jan-19 23:16:42

My son has been back and forth to CAMHS, since age 5, why haven’t they picked up on this?!

OT says she doesn’t know how school are going to implement her recommendations, as he won’t engage. Ds is a very complex etc and needs psychological input.

I’ve said to CAMHS it would be shame to get all this support recommended and ds cannot access it! Asked for their recommendations for a passive avoidant profile (as no one will listen to mine) Their response sort it out with school!

Bananasinpyjamas11 Fri 18-Jan-19 23:58:43

It’s not an official diagnosis, so it’s a bit hit or miss. If you feel it’s useful to give you ideas and suggestions then that’s fine. As with anything, it’s the specifics! Do you think touch typing would be helpful? Do you think your son is not giving it a fair shot? It can make a big difference... two fingers is quite slow.

If so, encourage him and see if you can help OT with suggestions other posters have given.

Claw001 Sat 19-Jan-19 12:47:26

Yes touch typing would be helpful. Ds cannot write for longer than 2 minutes without pain and cramps. His speed of writing is slow.

I will try to work with school as you suggest.

Bananasinpyjamas11 Sat 19-Jan-19 22:51:18

The key to demand avoidance is holding those professionals to account. It’s the way THEY approach it with your son. Advise them but he WILL engage if they learn how to approach him right.

It’s a common but frustrating issue - the school / OT will say ‘he won’t do it ‘
Well hello your son is not going to magically engage by himself. He is who he is.
However, those working with can and must try different ways - they need to change, not your son.

Bananasinpyjamas11 Sat 19-Jan-19 23:01:57

P.s. look up pda online there are lots of advice for the school.

Mainly
DONT BE DIRECT
AVOID PRESSURE
ALLOW TIME
USE HUMOUR
USE REWARDS
MAKE IT HIS IDEA

So for example, if I was trying to teach touch typing:
- break it down to the simplest first step
- make it very short, say 5 minutes
- write out the first step. This could also have a choice - left or right hand.
- put the instructions on his desk, near him, don’t say anything. Leave it 10 minutes. Put that a preferred activity will follow after it has been completed e.g. music
- see if a student can do it also beside him
- if not, teacher opens their computer and tries to follow the instructions, but makes a funny mistake
- then teacher asks him to make the choice, left or right.
- waits. Patience. No cajoling at all. Nothing said except. Left, or right?

If he doesn’t engage at all, then just leave and try again the next day.

Claw001 Sun 20-Jan-19 00:16:54

Thank you!

It’s difficult, school tend not to ‘get it’. They tend to force, then give up!

I’ve screnshotted your advice, very helpful.

Thank you again

Bananasinpyjamas11 Sun 20-Jan-19 00:30:13

Story of my life so far the ‘force it, give up’!

I read somewhere that this is so common. Educational settings blame the child, and not the environment (ie people, staff, skills) for behaviour with special needs. When almost all behaviour can be accommodated with changes to said environment.

It can be worth getting an ABC behaviour plan. The school have to document what happened just before your son refused, what the behaviour was and consequence. Usually, that means you can point out well...
A (antecedent - what happened just before) = staff asked X to start touch typing program
B (behaviour) = X says no, totally refuses
C (consequence) = touch typing is not learnt. Staff give up trying to teach.

Function = x is avoiding a demand, to touch type

I find the staff tend to focus exclusively on B and C. When really the important part of it is A. Staff need to alter how they present the demand.

There are examples here
www.specialconnections.ku.edu/?q=behavior_plans/functional_behavior_assessment/teacher_tools/antecedent_behavior_consequence_chart

Good luck! I’ve actually done a very simple, visual guide for teachers about my child - saying exactly what not to do, and what to do. I also chat to all of them every opportunity and really ram home the importance of being no direct etc. They will ignore it otherwise. Fail, and give up. I had a whole year of my child being anxious and not able to do anything and this year I’ve made sure his teacher and aides are totally on board. It’s really helped.

Claw001 Sun 20-Jan-19 01:00:22

Tell me about it! School go from one extreme to another! If ds says he cannot sit there (he has eye disorders, APD and food phobia) he is told he cannot ‘pick and choose’ 🙄 he can, his EHCP says exactly that!!

To recommended strategies ‘oh but he said he doesn’t want to’

So he just attends school! 🙄 with nothing!

They don’t listen, they know best!

I’m obviously going to have to up my listen to me game or change how I try to get them to listen!

Thank you so much again. I will look at link and bookmark x

OneInEight Sun 20-Jan-19 07:25:31

That is a really good list of strategies and pretty much what we try and do with ds2.

I could add.

Give him choice (but not too much as that can cause stress).
Give tangible goals to the small steps so he can gain that feeling of success quickly.
Normalise the activity. Presented as you HAVE to learn typing as your handwriting is rubbish would cause refusal in this household. Presented as its a good skill to learn because most people will need to do some form of writing in their jobs and its an advantage to be able to do it quickly would go down much better as it emphasizes the positive rather than the negative.
It wouldn't work in this instance but ds1's school find he is much more accepting of challenging topics when he is off-site because he is so much more relaxed so tackle things like PSHE in Forest school which he can't cope with within the classroom. The principle though is introduce new or stressful things when your ds is relaxed rather than when he is stressed.

It also helps if you use the same PDA strategies on the school staff! Especially the make them think "It is their idea",

Claw001 Sun 20-Jan-19 13:22:08

Thank you, really appreciated!

I never hear from school! We have review meetings twice a year, which OT does not attend. I wasn’t even aware of ds’s OT targets, or that he was refusing all strategies and asking for all targets to be removed, until I got my private OT report!

This OT report does stress that school OT needs to work with me, train me and transfer strategies to the home setting 😂 my opportunity to train her!!

I’ve bookmarked and copied all your very helpful advice.

Bananasinpyjamas11 Sun 20-Jan-19 23:44:08

Ha ha I loved the ideas too @oneineight I’m definitely going to use the pda on the schools one!

Bananasinpyjamas11 Sun 20-Jan-19 23:45:33

@claw it’s relentless isn’t it. Constantly having to educate everyone else. Who should be the ones with the knowledge in the first place.

Claw001 Mon 21-Jan-19 00:26:06

Exactly! Which is why I’m trying to get it written into his EHCP!

If he was ,agrresive avoidant’ ie lashed out etc it would feature in his EHCP!

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