Emergency services profile page

The J-Team developed a simple page-to-view profile just in case Jaustre leaves where he is staying without anyone noticing.

On one occasion Jaustre has left his home and walked to the local shops where he was used to getting hot chips. He was seen by area security guards, who called mum. Fortunately, everyone stayed calm and there was no trouble. As a result, we have given the profile page to all of Jaustre's neighbours and to the local security guards and police. We want to make sure Jaustre will be treated gently if the situation recurs & to try to let everyone know that he is better off at home rather than in a hospital.

Here is an edited version of the profile page...

Managing Jaustre's repetitive rigid ritualistic behaviours

i As part of every diagnosis of Autism is "restricted repetitive and stereotyped patterns of behavior, interests, and activities". This includes:

• "encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus


• apparently inflexible adherence to specific, nonfunctional routines or rituals


• stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements) persistent preoccupation with parts of objects"

For the full diagnostic criteria see the following link http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm

Jaustre has a number of restricted (in that they are one a only a few interests of his) repetitive (in that he does them again and again) and ritualistic (in that they seem to have to be done a particular way and that Jaustre will get upset if they are interrupted or not done correctly) behaviours. Jaustre's insistence on these behaviours seems to vary from time to time - sometimes he insists strongly that they happen and can get very upset when things do not happen & sometimes he doesn't seem to notice or care...

The following behaviours are examples recorded by the J-Team (but not all of them!):

Shoe tying (to look or feel right)
Playing with seat belt (until straight / just right)
School bag placement on the bus (all bags between 2 front seats)
School communication books stacked on desk (in a straight pile with Jaustre on top)
Presence of kids in playground (High school kids on a specific day)
Communication books written in (before a certain point in the day)
Adjusting others’ clothes (so they look symmetrical)
Correcting students not following procedure
Insisting on family routines (Mae has to take of her work ID & Jewellery off)
Taking clothes off the washing line (dry or not) [see video below]
Insisting that the clothes are folded (in a certain way)
Insisting that others flicking the pages of books or magazines for him (in a prescribed way)
Forcing others to fix bedsheets so they are 'just right'


So what can we do to manage these behaviours?

“Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent trying to work out the pattern behind everything. Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.” (Therese Jolliffe: A person with Autism)

Below are some situations where problems arise and some suggestions...

1. Where Jaustre is anxious and unsure what to expect 4 Help reduce Jaustre's anxiety and increase the predictability of the day by using his social stories, visual timetables, sticking to routines as much as possible etc


2. When there are changes to the normal routine 4 Explain clearly about the changes that happen, ideally before they happen. You can use his social stories to explain for example 'no Jenny.. Mum in car' if Jenny cannot transport Jaustre as usual. Recently at Holroyd School Jaustre has coped with the non-arrival of expected students in the playground by being shown that their classroom is empty. It may be that where changes occur if we can communicate to Jaustre the reason, he may accept this more.


3. 3. When he is bored 4 Try to make sure that Jaustre is occupied or engaged every half hour... you can use his music, talking photo album, bubbles, trampolines, having a shower, participating in household activities (cooking, helping to unpack the dishwasher, bringing the washing in!). If he insists on making you flick the pages of a magazine, it is helpful to ask Jaustre to 'wait' using a digital timer (for two minutes or more) so he learms patience. You can also ask him to take turns flicking pages. We have found when more and more expectations are put on Jaustre he becomes less insistant on these things happening.


4. When he loses a current favourite 'toy' 4 Try to make sure that Jaustre (i) has a limited number of 'toys' (put spares away in a safe place) (ii) try to help Jaustre to store his toys consistently in one place (a box or bag) (iii) be aware what he has with him so you know what to look for if he gets upset


5. When things do not look 'just right' to Jaustre 4 Try to allow Jaustre to fix the situation if it is not going to cause upset or disruption for others (if you try to prevent him from fixing the problem, he will persist until it is fixed). Tell Jaustre "once" and when he has tried to fix the problem redirect him back to his activity. Do not let him obsess over fixing something. If it is not clear what Jaustre wants (such as repeated washing folding), you can ask him "show me" and get him to fix it as he wants. You can use the situation as an opportunity to teach Jaustre to communicate either with a Makaton sign or picture exchange photograph.

Jaustre's medication is also aimed to help reduce his anxiety around his repetitive rigid ritualisitc behaviours.
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It is worth noting that not all of this category of behaviours necessarily causes a problem. Jaustre uses a number of household items as 'toys' and 'plays' with them repetitively. This is one thing that can give him some pleasure, settle him and can help pass the time.

Jaustre's 'toys' include pens and pencils which he likes to tap repetitively against boxes (sometimes filled with folded socks or shoe laces).





Pen & Box

Here's an example in the video below:

For more academic information see http://www.researchautism.net/asditem.ikml?print&ra=34&infolevel=4&t=3

Jaustre's adapted social stories

Jaustre is learning to use an adapted type of social story to help him understand what is going to happen in non-routine situations and what is expected of him. We hope that the more predictible the world is for Jaustre the fewer problems we will have.

We use one photograph per page with a simple bit of text to help others describe the photo consistently to Jaustre. We put the photos into a sequence in a photo album. We aim to have Jaustre read the story a few times before the new event and for the photo album to go with him on the trip.

In each story we try to identify what might confuse Jaustre based on previous incidents, and we explain as clearly as possible what will be different to usual. For example, Jaustre is used to Jenny picking him up & taking him to school. At the start of the Teen Time program, Mae took Jaustre and picked him up so we included both a "car with mum" photo and a "no Jenny" photo.

...................... For each social story we try to use a different picture of Jaustre and a different colour backgroud to help him discriminate between the stories...

HINT* It's also helpful to have some spare photos hidden at the back of the story to use just in case something changes e.g. Jenny can't pick Jaustre up so Mae has to instead....

Social Stories were created by Carol Gray. You can read more about this and her other fabulous works here http://www.thegraycenter.org/store/index.cfm?fuseaction=page.display&page_id=30

Jaustre's key word sign communication

Jaustre uses a few Makaton 'key word' signs to communicate what he wants.

Jaustre mostly uses:

(1) EAT

(2) DRINK

(3) HELP

(4) TOILET

(5) SHOWER

We are trying to help Jaustre (and everyone else!) learn more signs & to use his signs more independently to increase his communication. It helps to try to wait for Jaustre to use these signs rather than to 'read his mind' and do things for him. The more you practice the better you get!

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

All signs can be found in Makaton Vocabulary - Auslan Edition Book or "Key Signs" A Supplement to the Makaton Vocabulary" - Auslan Edition. Makaton is also known as key word sign. It is system of communication based on a combination of spoken words and sign language vocabulary. The signs used in Makaton are borrowed from Auslan –the language of the Australian Deaf Community.

http://www.auslan.org.au/

Jaustre's talking photo album

Jannel has made Jaustre a talking photo album with photos of his family and friends.

Everyone can use this to interact with Jaustre. Just press the button on each page and you will hear about each photo. See how it's done in the video.

Talking photo albums are available from the Linen Company (see link below)

http://www.linenco.com.au/index.php?page=shop.product_details&flypage=shop.flypage&product_id=65&option=com_virtuemart&Itemid=26&vmcchk=1&Itemid=26

Keeping yourself safe with Jaustre

To put things in perspective, being with Juastre is a joy 90% of the time.

He enjoys so much of life and the company of others who feed him, hug him, jump with him, blow bubbles for him, play music for him, fold washing as it should be done for him, find lost toys for him and generally make his life as easy as can be expected.

You can see big Jos having fun on the trampoline here...

However, as Jaustre gets older and bigger, on those occasions when he gets really upset he has the potential to hurt himself and others. It is really important that, AS SOON AS Jaustre starts to show signs of becoming upset, you think straight away about keeping yourself safe.

These signs of upset are easy to notice - an increase in loud noises ("lo lo lo lo"), pacing and jumping up and down, Jaustre hitting his head with his hand or banging his head on a wall or window.

Try to keep your distance from Jaustre & make sure you don't get blocked into a corner. You can try to calm him by asking him to 'show me' (what Jaustre wants), to 'wait' using a digital timer, 'count to 10' or saying "Shhh".

If he tries to pull you by the arm, say "hands down" and wait for him to stop (do not let him pull you anywhere by the arm). If he pulls your arm forcibly, instead of pulling away from him (which makes your arm the rope in a tug-of-war) push towards him and then try to pull your arm away quickly through the weak link between thumb and fingers. As soon as you are free, move away from Jaustre to a safe distance.

If you need to protect yourself or Jaustre further find a safe space or room for either one of you and wait until he has settled. If Jaustre is really upset or angry DO NOT try to approach him to calm him down - we have tried many times with no success - the only thing to do is to wait until the 'storm' has passed... Certainly never physically try to move Jaustre in this stage...

Hopefully before long the problem will pass (it has taken up to 1/2 hour or so). Hopefully you will understand that Jaustre's disability makes life very difficult for him and that he is still learning to manage his emotions better. Jaustre never holds a grudge, please follow his example!

Big J with his IPOD

Jaustre also likes having his photo taken - he finds the camera and hands it to Mummy