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Organising Children with ASD

 

This episode is about organising your home to make it Austism-Friendly with psychologist Jenny Rice. Learn why being organised is important for a child with ASD, what not to say when helping them declutter and how to help your teen stay on top of their schoolwork. If you have a child with ASD who is struggling to keep their room tidy, manage their time or maintain healthy relationships, you won’t want to miss this episode.

 

Guest Bio

JENNY RICE 

Jenny Rice is a psychologist who developed a special interest in the autism spectrum disorders from her early years on the Developmental Clinic and Autism and Related Disorders Clinic at the then, Mater Children’s Hospital in Australia. Now in private practice and with 35 years’ experience, she has worked with thousands of families affected by ASD to improve outcomes for the child, as well as family harmony.

 

Transcript

BONNIE: Hello and welcome.  Today we will be joined by psychologist Jenny Rice to talk about organising your child with ASD.  We are going to chat about why being organised is important for children with ASD, how to help them juggle school, family, social responsibilities and some simple tips to help your child become more independent. Welcome, Jenny!

JENNY: Thank you for inviting me.

LILY: So for people out there who aren’t 100% sure what is ASD?

JENNY: Ok it is a spectrum of disorders and it goes from severe where you have non verbal children within intellectual impairment to the other end which where you can have people with savant abilities and our universities have plenty of people with ASD, they represent every level of intellectual ability, the disorder is characterised by a social communication and really if I had to summarise ASD one of the biggest obvious deficits is what we call a theory of mind deficit and that is the ability to understand that other people have thoughts and feelings that differ from your own.  Another good way of looking at it is mind blindness and I like that because I use that analogy a lot.  Mind blindness if you use the analogy of vision impairment and vision blindness at one end you have children who have never seen light or dark or colour or shade and that would equate to the severe end of the autism spectrum disorders and then at the top end of um vision impairment you have got people who wear contact lenses and when they wear contact lenses they function like everybody else.  So that is a really big spectrum, so in the middle you might have a guide dog, you might have traffic lights that beep to let you know it is safe.  You might have all kinds of devices to scaffold you so that you can have a normal life, as normal as possible and it is the same for ASD, you need to identify the profile of the child to determine what kind of scaffolding the child needs.  To facilitate them to be the best they can be and reach their potential and many of these children you know the so called disability is more like a diffability and by the time they reach adult life and find their own preferred pathway um their differences become a lot less obvious.

BONNIE: Do you find that there is a particular set of symptoms than generally characterise a lot of people with ASD?

JENNY: We the theory of mind is a big one, so recognising other people have thoughts that are, thoughts and feelings um that are different to your own.  That is a big one, sensory issues, they are a huge number of people on the spectrum whose sensory systems are really wired and they maybe affected in only one of the sensors or all of their senses and they are generally amplified, so auditory sensitivities are a big one, but it can be olfactory which is sense of smell, it can be tactile defensive or tactile seeking behaviour, so the children that actually want to engage in their physical environment and touch and touch and touch, and there are the ones that want to avoid being touched and get very upset with people in their personal space, but the whole range visually these children are often very visually alert and easily stimulated visually, some of them are very sensitive to light and brightness but always they are very alert to detail, which is their strength in some jobs it is really important to have the eye for detail.  I like my surgeons to have that eye for detail.

LILY: Yes we all do

Laughter

LILY: So we are obviously coming from a perspective of you know we are focused on organisation and you know decluttering your house, getting organised, reclaim time for the things you love and I think one of the things when I think of someone who has ASD is that organisation is really important for that person, so could we talk about why being organised is an important factor for someone living with ASD.

JENNY: Ok I am going to challenge you there, for some children with ASD being organised is really important and for others if you touch their stuff they are going to be very cross, so you have got to be very clear about whose agenda are we serving here? Is it mum’s agenda to have all the Lego picked up, it would be mine, it is not very nice to tread on Lego in the middle of the night, but some children with autism have their own sense of order and it doesn’t replicate ours.  So I think you have got to be very respectful of the autistic way of seeing the world and when you consider that they work very hard to conform to the agenda that is imposed on them, i.e. what the kindergarten wants them to do from 9-2.30pm, what the school wants them to do from 9 – 3, by the time parents get their children they have been doing things that are anti their nature so another way of seeing the challenge for ASD children is they have always got their own agenda and it is competing with the agenda that we impose on them, i.e. mum and dad’s agenda, the schools agenda etc.  So yes they need to be organised because of sensory overload issues, I am a great advocate for very sparsely decorated homes and rooms for these children and unfortunately the trend in education is to have lots of bookshelves, lots of paintings hanging from the wall, lots of stuff all over the wall, so it makes me wonder if the old way of the classroom being sparse and it would have a picture of the Queen, the multiplication table and the alphabet and that was it, and you didn’t share, you didn’t share your pens and pencils, you had your own desk, there wasn’t indoor voices and outdoor voices, there were no voices when you were inside, you listened to the teacher, and I often wonder whether today’s education environment is actually flushing children with ASD out because it is so contraindicated, um to the way they are wired, maybe those kids that I was sitting next to when I was a little girl had autism but they were catered for really well, they had a very calm highly structured environment and so their anxiety levels were in check.  So back to the question about organisation and it is about management of anxiety, if you can manage the child’s anxiety, i.e. through having a decluttered calm predicable environment, you are accessing their cognitive capacity i.e. their thinking and that is what we need, we need out ASD children to learn the social stuff that other kids intuitively know.  The ASD mind is a very logical mind and a lot of social conventions are not logical so it is really hard for them to except sometimes, you do it because you do it.  You do it because we said so, you do it because it is a nice thing.

LILY: I think it is so interesting what you say about the classroom because many people out there with would walk into our classroom with all that, the pretty colour and all the stuff that is up there and think wow you know there is so much here for my child to learn, what a beautiful classroom but someone else looks at that and thinks wow that is too much for me.

BONNIE: That is over stimulating

LILY: Yeah over stimulating.

JENNY: Yeah a lot of the therapists that work with children with ASD will have very compartmentalised work spaces where they have a place for everything, and I think it is about getting in early with the littlies and making it a part of the game.  So you are playing with this game and a part of the game is putting away of the game and a lot of Kindies and childcare centres these days do that really well. In the home environment I would be encouraging tidy up to happen after, okay so the kids got the Lego out, lets put that away before we get the jigsaws out.

BONNIE: So it’s the finish one activity before you move onto the next one

JENNY: Absolutely, so one of the things that causes anxiety for children with ASD is closure, finishing.  I am busy mum, mum say’s come to dinner, but I haven’t finished, I am busy, my show is still on.  So closure and transition anxiety is really um, it really impacts on happiness in the family, harmony, but it also elevates these children, they like to finish things they have started so I remember a period in education and I don’t know whether this might have been the period where you ladies went through school, where they would have work stations and there would be a little bell and you would move, little groups would move from one work station to the next one, a little bell would go off, well that was a nightmare for children with ASD because they would just get into something that they thought was terribly important and be enjoying it and then a little bell would go and they would have to all move to the next thing.

BONNIE: Yeah that is a really good point and I actually think about Mr 5 and he does that at school because I have gone a couple of times for reading groups and they have the timer and they move between activities and he seems to cope alright with it which is good considering he is you know a very logical black and white child, but I do see a couple of the kids that yeah really struggle with the oh we are not finished and how can we move on thing.   What is the strategy to stop that or to help them with that.

JENNY: Well if you know that you have an ASD child in the group, you shorten the activities, I will give you an example, one of the activities that in the early years of education is literacy might be put the word in the empty space, and when you finish that you can do a drawing.  Well with the ASD child you say just put the word in the space because they are not going to know what to prioritise, what is the important thing here, this is an ASD trait,  is the important thing the word or the drawing? And so if they have put the word in the space, that is actually the task the teacher wants them to do, the drawing is killing time while the slower children catch up, but if you then say to that child, well now you can stop that drawing and they are only half way through it they will get upset.  So we do a lot of things that really escalate the anxiety levels and stress levels of these children.  It is important to them for closure, so it is about getting in early and helping them come to end of something, timers are great, count downs, warnings, giving them plenty of time.  How long do you think it will take you to finish that drawing, 5 minutes, lets put the timer on and if it does take a little bit more take into consideration hey look it probably is only going to be a little bit more and they will be happy if they get that extra minute,  sure some kids will take advantage of that, the parents know that child but it is just respectful um to not say I said now, do it now.  Stop what you are doing and do it now. Stop what you are doing and do it now.  Stop what you are doing and do it now.  It doesn’t work.

BONNIE:  So it is about having a bit a negotiation. Helping them feel like they have got a little bit of power and a little bit of control.

JENNY: A little bit of control. Sometimes its about, would you like to do it now or would you like to do it after dinner and give them a choice of two,  I think, I just think it is respectful.  But you can also, the thing that I think it really important to realise with children with ASD and we are taking about organisation, so we are talking about possessions and what they lack in interrelationships and social relationships, friendships and the like, they form very strong attachments to things, and activities. So whether it is Thomas the tank engine, or their favourite toy that they drag around, those things are very important to them and for mum to whisk them away and shove them in a box can be really devastating for these children and I think you have to be very respectful of the fact that the relationship they have with possessions is quite different to the relationship neuro-typical.  So when I go and do Kindy visits for example, you will see the neuro-typical children will negotiate about the use of toys or the additions to the Lego buildings or the blocks, they will negotiate anything to keep a social interaction going whereas the ASD child will push the other child out and will say no no no I don’t want that piece on my building, no don’t touch that, that’s mine.  So territorial and their attachment to possessions is really important, so in the home it is about respecting that attachment and working with it.  So your favourite colour is blue, why don’t we put your favourite toys in the blue box. What colour will be put the things that are less important to you, when you have friends over which are the toys you do not want other children to play with, because lets put them out of the way, out of sight so that you don’t have to worry but be aware if you leave certain toys out the rule is they are share toys and you place those rules in advance.

BONNIE: Because kids who have ASD are really big with rules aren’t they?

JENNY: And it is something we can use, and we do use and often when a new thing comes into the house before it comes into the house, before it crosses that threshold you can say, oh you have got a new PlayStation, the rule is it comes out at 5 o’clock and it goes to bed at 6 o’clock.  And you can put the rules in place ahead of time.  It is important because the other thing we know about these children is you can set precedents without wanting to really easily.  So if the PlayStation comes into the house without your terms and conditions you are going to have an argument when you ask him to stop

BONNIE: Mmmhmm

JENNY: So I have always warned parents, you know I call them the parent traps, so that toy that that child has been nagging you for, it is a very powerful toy, it has a lot of reinforcement value, it is a carrot you can use, don’t let it come into the house without putting terms and conditions on it.  So again I am not quite sure how that ties into organisation but if you think about the characteristics of the child with ASD and work with them and the very things that can be seen as challengers being rule bound and rule conforming, you can use as strengths.

LILY: You can use those things to your advantage, as well

JENNY: Absolutely.  Yep

LILY: So from what you are say it sounds like there is a lot a preparation that can be done to set things up,

JENNY: Yes

LILY: To set yourself up for success and set you ASD child up for success as well.

JENNY: And I think it is easier these days Lil because in the early days a lot of paediatricians were not going to diagnose children under 5 especially the high functioning children, we would wait and see how they coped with school.  Fortunately because the knowledge is out there now we are picking these children up and identifying them a lot earlier and we in the business, the OTs and the Speechies and the Psychs advocate early pickup because it makes such a difference, you can get in early and set the stage for success.  It is really hard to back track.  So for example if I get a child at 11 who has just somehow flown under the radar and hasn’t being picked up early there is a whole lot of stuff that I have to try and undo.  There is precedents that have been set in that child’s mind but that is the rule that they have always gone by, it is very hard to change those rules.  So if you are going to make rules you have to like those rules.  I use the example of isn’t that kid cute, he is 3 years old and he goes into a supermarket and presses every dam button in the elevator and we think it is all very cute at 3 and then at 10 is still doing it,

LILY: Yeah

JENNY: You know not funny anymore

LILY: No the joke has gotten old for some of us

JENNY: Yeah, yeah

LILY: Well I think we should maybe take a quick break and go into our next segment, which is clutter confessions

CLUTTER CONFESSION

LILY: Clutter confessions is all about a weird, wacky or wonderful item that you have held onto, so it is not that you have got a huge pile of laundry in your spare bedroom, that you feel that is your clutter confession, it is more that weird thing you picked up on a trip overseas that you got from some market that someone else would go what is that and you think no it is so cool I love it and I cant let go of it.  So is there anything you can think of Jenny that you have hung onto?

JENNY: There are so many things I cannot begin to narrow them down, and so I am thinking I better make then safe things that I have kept and I don’t think I am going to do a very good job of this but I a sentimental one, I will just go with the sentimental one because now of course it is so out-dated and that was a little brooch that as a little girl I just loved it, it was a little bird of happiness, I have still got it and I was going through all my little knickyknacky you know those things on top of your, the trinkets, the trinkets and the miscellaneous stuff and I did a great job, you girls would be proud of me, I threw out so many trinkets but you know what even though no one will ever pin a brooch on a little girl because of health and safety I couldn’t part with it and then I thought I don’t have to anyway, it only takes up a tiny little bit of space.

LILY: Absolutely

BONNIE: It is all about the justification isn’t it.

LILY: No it holds a beautiful memory for you, it is a beautiful sentimental piece.

JENNY: Well the other one that I came up with of course was the, all the four boys medals for soccer and volleyball and water polo and swimming and you know these days they give those out for everything and so I had,

LILY: A huge box of them, for trying yes

JENNY: For participation, so for showing up yes so having had 4 boys who did everything I had boxes and boxes and I sat there looking at them thinking of I remember that race meeting and I remember that that game and getting all very wooshy over it and then I thought I wonder what my now adult men would think if I offered them back to them, they would say get rid of them, so I was very proud of myself, I got rid of them.

BONNIE: Oh well done

JENNY: They weighed the rubbish bin down.

BONNIE: I can imagine and it is interesting how many people we come across who has adults there parents give them those sentimental memorabilia items and they go what did you hold onto this for?  Just one of those things

LILY: So we want to hear your clutter confession anything weird, wacky wonderful, any item in your house that you have held onto that other people might go oh that is a little bit weird, that’s a little bit odd, we want to hear about.  Jump on over to our Facebook page Little Home Organised podcast and all you need to do  is send us a message on the page, so just hit the message button and sent it as a voice message and then we will get to play it on the Podcast and don’t worry we keep it anonymous.

LILY: So I have a question getting back to children with ASD and in your home? So if I am someone who happens to be more chaotic in how I leave my space and I have a child with ASD and they grow up being around that chaotic space, if they grow up with it will they be more accustomed to dealing with it or handling it or that seems to be a pretty standard trait across the board that you know that visual stimulus is too much in general?

JENNY: That is a really good question and I guess something I didn’t touch on before was that every child with ASD has their own temperament, so if you have got a compliant little temperament, a child with ASD you have got a very different kettle of fish to the testing child who is going to do it their way come hell or high water.  So chaos breeds chaos for sure, absolutely.  So if you have a chaotic household you are going to have the kid who the teacher is constantly ringing you and saying they didn’t do their homework, they didn’t have their library bag, they didn’t have swimming costumes.  It is certainly really valuable to model the behaviour that you want to see for your child and the schools do a great job of helping kids get organised apart from their cluttered rooms but there are additional things you can do, so colour coding is a really good thing to do even with, in high school is a real challenge where kids have to move from teacher to teacher, classroom they go to those lockers for example and so colour coding putting all your science gear in one folder with its own set of pencils and rubbers and rulers, so each subject has their individual pencil cases because relying on the child to think about what do I need in the science lesson isn’t going to happen and one of the reasons is that they don’t really want to go to science anyway.  So colour coding and having everything the child needs so they can go to the locker and go boom the red one is science, off I go and it is has got everything I need for science.  The other thing that is really important about storage and organisation for these children is accessibility.  So in school situations in particular it always makes me cringe when I see that the locker that that child has been assigned is right in the middle, so they are going to have kids reaching above them, kids underneath them, kids to the right, kids to the left and it is in a transition period.

LILY: Yeah it is like all things in one

JENNY: It is a perfect storm.  So even choosing the right location for the locker always choose the one on the perimeter and the one that they are not bending down to so they have got bodies above them, above their heads reaching over them. So some of the kids are fine and they adapt and they just stand back, what happens then is they are late to class, so even simple things like the location of the locker and organising their gear and a lot of teachers are really onto it now with the set up of their tidy boxes and the bags on the back and will schedule weekly clean outs, their tidy boxes usually look pretty awful, and of course they can’t find anything so you do need to model it.  I have been asked many times about you know they don’t keep their room tidy, what do we do with this? And really the bottom line is you do have to show them the way.  So starting out by modelling hand over hand, I will do the pencils, you do the shoes, lets see who can do them the fastest, and show them that you categorize things, the thing about children with that visual alertness is they see every individual thing, they don’t automatically group it into categories.  We do, most of us do, we will say okay I am going to pick up all the pencils and I will put all the pencils away and low and behold you do the pencils, you do the shoes, you do a few, the Legos and all of a sudden the room is tidy.  When your child stands in the doorway and you say tidy your room, it is like an explosion of visual overload, you actually have to help them formulate a way of doing it and that is categorizing so the pencils, the shoes.

BONNIE: That’s a great tip, it is like that whole eating an elephant one bite at a time thing, you have to break it down into chunks because the task is much easier to handle when it is in smaller chunks.

JENNY: Yeah and it is important that they can see that it is doable because just tidy your room it is like telling a child to be a good boy

BONNIE: Yeah what does a good boy look like

JENNY: Yeah that’s right

BONNIE: What does a tidy room look like

JENNY: And you do have to recognise the timing as well, so their agenda versus your agenda. Have they been good little kids all day long for the teacher and they come home and then mum has got a huge set of rules in place, um do this, do that do do …. And then they wonder why they have an explosion.   So being respectful of the need for,  I have children who say to me Jenny when is it okay to have own time.

BONNIE: Mmmhmm

JENNY: And it breaks your heart because it is important for them to have their own time and for us to be respectful.  So unfortunately for parents they often get the children at the worse time of day, they are already spend,  they have already being good all day.

BONNIE: Its like they have held it all together all day and now they are at home in their safe place where they can let it out and often as parents we get the ugliest bit

JENNY: Yeah for sure.  For sure and I am very aware of that and then you throw in sibling that likes to poke the bear

LAUGHING

LILY: And a disaster ensues.

JENNY: Absolutely, yes, yes yes

LILY:  So unfortunately we are running out of time but I did want to ask one last question and I feel like we could as you say talk about all this for hours and you do have a wealth of knowledge.  Lets say you are in a position where your house is a bit more chaotic and you are thinking all right I want to make this room less stimulating, I want to make my house less stimulating, I want to do this but I want to work with my ASD child so that this isn’t a really disruptive experience, if you are looking to declutter what would be some things that parents should keep in mind when doing this?

JENNY: Oh well you can have a few rules. If one thing comes in, one thing goes out,  they can be very attached to not want to get rid of things, some of them will collect stones and they can be really ugly little stones, they don’t even have to be pretty stones but to them they are really important, they are a collection, so you can have a rule about, you can have 20 stones, you cant have 2000 stones, um which 20 stones would you like, and being respectful if they have done a Lego building and they don’t want you to deconstruct it, where can we place this so it doesn’t trip you over or your brother doesn’t get to it.  So recognising the significance of the things to the child is really important.  I think one of the hardest things is for them to relinquish toys so their worse than the worst when it comes to no, no, no. no….. I was using that or I will use that and they have outgrown it by 5 years. Some of the children have got wonderful little hearts and will be very happy that sense of social justice which some of the children with ASD are, do have and knowing that it is going somewhere where that little boy hasn’t got any toys and you haven’t used it, sometimes that works. Another one can be I tell you what we are not going to throw it out, we are going to put it in a special place in the garage and then 2 years later when the child hasn’t missed it you can dispose of it. You can negotiate that instead of just cold turkey throwing it out um it is still there but put it out of sight and out of mind and see whether the child actually does miss it.  The unfortunate thing is so many children on the spectrum have brilliant memories.

LILY: Yes

JENNY: Absolutely amazing memory

BONNIE: Like an elephant

JENNY: Like an elephant

BONNIE: Mmmhmm

JENNY: So you have to follow, you can’t deceive them, you can’t put them in the garage but actually put them in the bin, you actually do need to have that bag because in the morning they are going to wake up and say, you know that bag

BONNIE: Can I have a look at it, where is it, can you show me.  Prove it to me.

JENNY: Yeah, yeah.  I wanted to talk about the clothing too because I know so many parents get upset about the way their children dress

BONNIE: Yes

JENNY: It is really simple actually, you just buy clothes that will be colour coordinated and you have a tops draw and a bottoms draw, and any top will go with any bottom

BONNIE: Yes

JENNY:  Because a lot of the children that I see come in and I realise they have very strong preferences in their clothing, I can tell because I think it is lovely that they can choose, they can choose okay yes you choose what you want to wear today.  I think that is a nice thing for them to be able to do.

LILY: Well this has been awesome, thank you so much Jenny, there has been so much quality information here for people and I feel like I have learnt a lot as well.  If people are wanting to learn more about working with their ASD child are there any resources you can recommend them?

JENNY: It is not easy to do because there is so much stuff on the Internet but it is not all quality.  I think the important thing is to realise that you will become your child’s expert, you will write the how to parent child 5 book.  There is no parenting book out there for your child, you write it as you go there.  There are certainly a lot of things you shouldn’t do, there are a lot of no’s but there is an infinite number of yes’s this is, we can do this.  So it actually gives you licence to be incredibly creative.  You can break all the parenting rules really and be very creative.

BONNIE: Well having 3 children of my own that is good to know, because a lot of what you have said today I am thinking yep Mr 5 definitely ticks a lot of those boxes and we are going on the journey at the moment for diagnosis but it is good to know that he is someone, even though he does have an elephant memory um we started very early with those rules and those expectations of about when things came in, and what to do with them and we have an orphanage that we support and so now he will come to me and say Mum I would like, I don’t like the wiggles anymore, can we give these wiggles undies to the orphanage and I will go okay yep great no worries.  So that has been something that has been really beneficial for us in our household I think.

LILY: Well thank you so much Jenny for coming on our show today it has been awesome learning more about kids with ASD, it has been really valuable thank you.

JENNY: Thank you for inviting me, I have enjoyed it.

MUSIC

BONNIE: Onto this weeks tidy task, so if you have a child that has ASD or you have just got  a child who is maybe not as organised as you would like them to be, your tidy task this week is to pick one little space to work with your child to actually declutter and organise.  So use some of the tips and tricks that we have talked about with Jenny here today.

LILY: So maybe something like introducing a colour coding system

BONNIE: Colour coding is so brilliant, especially if you have multiple children as well, because you can negotiate with the child and say what is your favourite colour, right we are going to buy baskets that are orange for you, and your sister is going to have purple and then it makes it really visually easy to see what belongs to who.  So that’s it for your tidy task this week.  If you are on Facebook we have a community that we would love you to join, it is Little Home Organised Community come and share your before and afters, ask questions, there is a wonderful brains trust in there.

LILY: And that’s it for this week’s episode.  We want to thank you so much for tuning in

BONNIE: And remember Progress Not Perfection.

LILY: See you later, bye.

MUSIC

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