Hi Everyone,

Here we are nearly at the end of 2010! The Taranaki Branch of Autism NZ recently had their AGM and a presentation on visuals took place on the same evening. Two Mum’s (Rowena and I), talked about how visuals have helped our sons (both called Isaac), and brought along examples of visuals we had made and used with our sons. It was quite hands on as at the end everyone was able to come up and look at the different visuals - photos, books, clocks, calendars, charts, schedules etc. A Clinical Psychologist by the name of Nicola Waters also spoke about the use of visuals in people with ASD - the visual thinkers! So you basically had the best of both worlds - a professional who has worked with clients and taught them to use visuals and two Mum’s who use visuals daily and have made/or adapted a lot of what they use.This talk will be repeated in March 2011, see below.Have a great Christmas!

Karen - akglenny@ihug.co.n or 7512287President

Mairi WharehokaPh 7591861

SecretaryCurrently covered

by President and Treasurer

TreasurerVanessa Elliott

Ph 7579231

InformationCoordinator

Judi GopperthAutism NZ Inc.

Taranaki BranchCommunication House62 Powderham Street

P.O. Box 3355New Plymouth

taranaki@autismnz.org.nzPh (06) 7695958

National Office0800 AUTISM

TaranakiBranch

Newsletter

Dec/Jan/Feb2011

Pg 2 - Judi Gopperth our Information Co-ordinator Pg 3 - ApptitudePg 4 - Paediatric and RTLB conferencesPg 5 - A note from a parentPg 6,7&8 - Living with Extreme AnxietyPg 9 - Social LearningPg 10 - What’s On?Pg 11 - Items of Interest

Visuals and ASD talkcoming MARCH 2011

date and venue to be confirmed

Anna Tullemans is coming to New Plymouth

Anna will be in New Plymouth on Saturday 27th November. She is a practicing consultant specialising in Asperger Syndrome.

This workshop will be full of practical examples and strategies that can be used in the classroom and will leave you with a better

understanding of ASD.If you missed seeing Anna in New Plymouth she will also be speaking in

the following areas* Auckland 29th Nov* Hamilton 30th Nov* Tauranga 1st Dec

For more details email Pat Gluck on Pat.Gluck@autismnz.org.nz or ph 04 4707616

Welcome to our 2010 end of year Autism New Zealand Taranaki Branch Newsletter. I have no idea where the year has gone-just know that Christmas and the holiday season will be here soon.The last three months have been exceptionally busy with many opportunities to increase ASD knowledge and awareness.National ConferenceAutism NZ- Celebrating ASD in New Zealand conference held in Wellington during September was well attended by over 500 delegates Nationwide. The calibre and information received from speakers and presenters were second to none. If you were unable to attend the conference, an mp3audio CD of conference presentations if available for loan from our branch office. Taranaki Branch AGMOur AGM was held recently and was another inspiring opportunity to learn. Wonderfully informative and practical presentations were given around the use of visuals and ‘Trakakiwi’ – a locator device. ShowcasingAutismnz National office and our Taranaki Branch have worked closely in rising ASD awareness and information at the recent National RTLB Conference held in New Plymouth and will also be showcasing again at the Paediatric Society NZ conference.Training

• Anna Tullemans Morning Seminar 27th November 9.00 – 100pm @ the Auto lodge. Anna’s workshops are full of practical examples and strategies that can be used in the home or classroom leaving you with a better understanding of ASD.

• Earlybird (a programme for parents of children under 5 years of age diagnosed with ASD) is coming to Taranaki very early 2011. Dates, times and registration forms for expressions of interest will be forwarded in the near future.

Social and Support groups (Friendly, informal, helpful and inclusive)A reminder that you are invited to join in with a group(s) of your choice. All welcome

• Girls Night Out – monthly ‘Coffee and dessert’ Thursdays 7.30• Coffee Group New Plymouth – monthly Mondays 10-11.30• Coffee Group – Hawera – every second month • Social Group – monthly Sundays @ Espresso 2 pm

Christmas and HolidaysAutism Taranaki Branch office will be closed from Friday 24th December and re-opens Tuesday 18th January 2011

Friday 24th December – closed Tuesday 18th January – re opens General Reminders

Ordinary Office hours: Tuesday – Thursday 9.30 – 3 pmLibrary loans: love to receive any outstanding loans back - no questions asked-will just appreciate having resources back to lend out to others.

Many thanks,

Judi Gopperth

Notes from our Information Co-ordinatorJudi Gopperth

Page 2 Dec/Jan/Feb 11

"One year milestone for the Apptitude group" ____________________________

A.P.P.T.I.T.U.D.E Autistic People Progressing Together inspired Totally United & Determined Everyday

Introduction:The Apptitude group is a Taranaki group for people on the autistic spectrum and also for the loved ones & family of those who are affected by autism. About the group: The group is basically a small group of individuals that meet once a month & chat about life in general over a coffee in a cafe environment in New Plymouths CBD.Any suggestions for other activities are most welcome, get your thinking caps on! Reflection from over the last year of the group:There are a couple of group members that have held the group together, in particular Mr & Mrs Poole, many thanks for your continued & consistent support. One issue that we do face due to the nature of autism is that it has often been difficult to get attending numbers up as many people on the spectrum are not particularly sociable & withdrawn by nature, someone used the analogy of it being like organising a banquet for anorexics. Some people float in & float out over the months, when we see them it is good to catch up with them to see how they are progressing with things since we last met with them. One benefit that has come from the group I believe is that it gives people the opportunity to mix with out having the fear of being judged & they can walk away feeling like they have been listened to & that they have contributed in some way to the group, which is satisfying. The website:The website has had over 14,000 hits in the last year, many people from all over the world stop by to have a look but unfortunately numbers for people who join the website are low.I would like to see more people over the next year join both the group & the website, even if it is just to leave some feed back or ideas. It is difficult to grow & progress & satisfy a market when there is nil feed back, therefore your contributions & ideas for improvement are most welcomed & needed. I can be contacted regarding any suggestions, idea's, comments, questions or inquiries that you may have about the group by using the contact details below. Regards Christopher O'Connor_________________________________________________________________________

_______________

Email- chris.oconnor@windowslive.comWeb- www.autismnz.help-out.net

Mobile- 027 5676049Home- 06 7546222

________________________________________________________________________________________

Page 3 Dec/Jan/Feb 11

!RTLB Conference in New PlymouthA highlight of the recent RTLB conference in New Plymouth was the inclusion on the programme of Dr Libby Weaver. She was able to speak to over 500 RTLB from all regions of New Zealand on her research and associated work around micro-biology and nutrition.! For those of you who have not seen or heard of! Dr Libby's work, it is very thought provoking and challenging to the field of knowledge around Autism.! Dr Libby spoke for over an hour to a captivated audience who listened, intrigued by her depth of knowledge and passion for her subject as shedescribed in great detail the work of the gut and the impact of diet and gut absorption on behaviour, particularly relating to Autism.! She was not promising a cure for Autism, but was enlightening her audience on the impact of diet and poor gut functioning on brain development and Autism symptomolgy..!!!!! I realise there is a need for further!research in this field and there have been some children who have not responded as well as we may hope, but there are definitely many more who have benefitted from the work and research supported and promoted by Dr Libby. The feed-back from RTLB was extremely positive as there are very few people with the level of knowledge and experience out there

who can share with people who are dealing with Autism in their day to day professional lives. By Jenny Tippett RTLB

Paediatric Society of New Zealand 62nd Annual Scientific Meeting

Autism New Zealand attended this year’s Paediatric Society meeting here in New Plymouth on 24-26 November.

Judi our Information Co-ordinator represented Autism New Zealand on a National level as well as our local branch here in New Plymouth.

We had an exhibition stand and Judi was available to share information and network amongst many Health Professionals. All those attending the event had the opportunity to take away some information / knowledge related to ASD or Autism New Zealand which will be of benefit when working alongside Young People and their families.There were a variety of attendees from around the globe at the conference; Paediatric Consultants, Registered Medical Trainees, Nurses and Allied Health Professionals, Researchers, Students and many more. Some of these professionals are involved with the assessment and diagnosis of young people with ASD. This is such an important aspect of the ‘journey’ for many families. Judi had copies of the New Zealand Autism Spectrum Guideline available as well as other documents and information related to ASD and Autism New Zealand.

Judi also promoted membership to Autism New Zealand and the benefits / information which can be obtained by becoming a member.

We were fortunate to be exhibiting at the conference and would like to thank the conference organisers / committee for this.!" " " " " " " By Clare Back

Page 4 Dec/Jan/Feb 11

A note from a parent of a young person with ASDHi,

Mairi asked me to introduce myself to everyone involved in the branch, as I have recently joined the committee of Autism Taranaki after been approached by Judi.

My name is Deborah Evans, and I have a son aged 8 1/2 years and a daughter aged 6.

For us the process of getting a diagnosis for our son was quite quick, thanks to a great psychologist at CAMHS. Although it was still a shock to be told that he had an ASD, the fact that he was different to other kids, and that he was having a lot of difficulties, had always been obvious and was becoming more obvious as he got older, particularly in relation to school.

The last year in particular has been extremely difficult for all of us, particularly our son, due to a total lack of any understanding or support at school, which has resulted in very serious consequences. The decision was therefore made to change schools, which has turned out to be the best decision we could have made.

Thanks to finding a small, inclusive school where the staff and students are very accepting of differences, where the teacher and support staff have gone out of their way to work with us and the professionals, and have been prepared to start implementing strategies, and to seek outside help and advise for our son, things are starting to improve. We have been very lucky to have had tremendous ongoing support from the psychologist at CAMHS.

Through these experiences, it has been obvious to me that there is still a long way to go to educate some people about ASD and difficulties this posses for people on the spectrum, and the importance of the need for all children affected to be supported by a team of people, who work together towards improving their ability to function in the ‘real world’.

Because of this I hope to be of some help on the committee to continue their work in this area.

Page 5 Dec/Jan/Feb 11

Living with extreme Anxiety

I wanted to share with you about anxiety and how it affects children with Autism Spectrum Disorder, A.S.D. It is easier for me to specifically recall this from my own experience with my child who has a diagnosis of Autism.This is how Anxiety presents with my child but it may be different for yours. All children with a diagnosis of Autism or A.S.D will be affected by the disorder differently.Autism is a very debilitating disorder and it quietly takes hold of your child little by little, day by day. It is often referred to as a puzzling disorder because it is many things that make up to the whole that completes the symptom picture of Autism.Our happy contented baby turned into a crying, screaming, flapping child, who I simply could not make sense of.I became consciously aware of his flapping around the time he was three years old, but initially put this down to excitement. He suffered night sweats that were so bad we had to completely change his whole bedding and clothes on a regular basis from three to three and a half years old. Blood noses also occurred around this time, maybe because of overheating, as he would only be able to sleep if he was hidden under all the covers even in the summer.He became obsessive. Specifically about broken cracks in the ceiling, walls and tables, to the stage where he would point them out repetitively and at times wake in the night talking in parts about broken things.He became obsessed with going to bed at 7pm but somehow knew this through his own body clock - great at the time but not normal for a child of this age.He would be screaming and crying for long periods of time after kindergarten, day-care and school.He would jump and flap his arms continuously with a contorted face. He would use fragmented made up language, e.g. “nah I do it, you do it”, and “Ava” for ice cream and “Ar-de-da” for helicopter.He would not be able to listen and concentrate when he would flap and go off into his own world. He would have extremes of emotions but for the most part he would say he was sad. He often would say “he wanted to go home” which I thought was odd considering we were home at the times when he said this.He would be running out of shops, lying on the floor and rotating in a circle, squealing, with the ability to wind up and lose control, getting louder and louder. He would throw himself on the floor in the supermarket and refuse to move, crying and screaming.He would always have to run and be in front all the time when we would go for a walk. He would not cope if we went for a walk in a different direction from our normal route.He preferred to eat the same foods all the time. No two days would be the same so it wasn’t until after we had his diagnosis that I recognised that these were the major signs of anxiety for our child.What was the most obvious observation was his need to control everything around him. If he was not given this control he would try and take control by himself. If this didn’t work then you would start to see more extreme behaviour.

How we manage AnxietyI think it is really important to point out that anxiety never leaves a child who lives with Autism. They can however learn how to manage this with the help of understanding parents, caregivers, wh"nau, teachers, RTLBS, Sencos, Principals, paediatricians, psychologists, coaches, etc.If you have a child in your care who displays any of the above behaviours then they may have high anxiety. It is your job to now work out how to reduce this anxiety which can be a daunting task.Firstly you need to identify what are the triggers for your child’s behaviour e.g. screams in shops, then the best solution would be to limit visits to shops and try and desensitise your child to this

Page 6 Dec/Jan/Feb 11

environment by doing short visits at low volume times.Quite often teachers will say “he never does this at school” but the parents will always say he does this after school. The school will still need to work with the family/wh"nau to try and reduce the anxiety for the child. Anxiety needs to be taken seriously as the consequence for the child and family are far-reaching. A good school will address these issues and will embrace working together to come up with a better outcome for both the child and the family.Children who are highly anxious will not be able to learn as their brain will be so busy trying to manage the anxiety. I have seen the evidence of this with my own child who is now able to learn and express his needs more because he is not so highly anxious.

Things that work for usPlease note these things are on-going and are not removed or discouraged when more language comes in, simply because he would revert back to some of his old behaviour. They are, however, adjusted according to his development or stress levels.

Visuals – pictures to help explain the child’s world around him/her and what is expected of him/her. Children with A.S.D are literal so everything needs to be crystal clear.There can be no shades of grey. Instructions must be concise and able to be understood immediately by the child.

Language - Please remember Autism is not a language disorder which people often get caught up with as the child develops more language. Asperger children who have veryarticulate intelligent language are often misunderstood and unrealistic expectations put on them. I have found as my child has developed more language with age he cries less so language definitely helps reduce anxiety.

Comprehension – Quite often children have the language but their brains are still not able to put the words in the correct context. They often are misunderstood because of this. An example of this is my son said to us the other morning “get out of bed you fools” - not really appropriate but quite funny. He has also taken to calling people “liars” especially if they do not give him the right answer to his question. When he gets this type of communication wrong it can cause great anxiety as he cannot understand what the problem is.

Social skills – Knowing what is appropriate socially or the social rules is important e.g. my son is seven now and still forgets to say hello or good mornings so I normally use a gentle prompt. Other times he will engage with someone but in an inappropriate context. An example of this is when we were at the doctors he went up to a complete stranger and leant right over his book so he could see what he was reading. I was lucky the man thought this was amusing but as he gets older these types of situations will be misunderstood by others. He will also still say “I don’t know how to make a friend” even though he has been shown numerous times.These types of situations are very stressful for him and I find he will remove himself or not join in so he does not have to work it out. This is an on-going battle and he has improved greatly over the years, but still has a long way to go. Social stories have helped with this.

Moving ForwardOver the years I have had professionals say that they do not understand why they have to use visuals. For parents, when they are relearning about their child and this disorder, they can have the same feelings. It is not until you use visuals and see how the child is less anxious that you really appreciate the use of this tool.For me it is really exciting to see him now ask to see a picture or he will say “can you show me on my calendar”.Visuals are the only method that has research based evidence to show that it works yet these

Page 7 Dec/Jan/Feb 11

children continually have to prove their disability to professionals. This is partly because a lot of children with A.S D have language.Let me ask you this, do we say to the blind child “you have to see now because I can’t be bothered putting support in place for you today”. The answer is no - we do not say this because it would be heartless and discriminatory.Anxiety is not just a word - it has serious consequences for the child and also for families/wh"nau. Assisting children to manage their anxiety will definitely help them to have a better future.

Examples of VisualsRemembering that language is not their first language and predominately A.S.D children think in pictures.

1. What are the sequence of events for the day, so they know what is coming next? 2. The fewer surprises the less anxiety there will be. 3. What is it that you want your child to understand to make your life and their life stress free?

TriggersWhen I have to repeat myself or find I am stressed by his behaviour I know it is time to put in place a visual. For me I could tell him a hundred times but it is not until he sees it that he truly understands what it is I am trying to explain to him. Below are a few ideas that I have used and found worked:

Toileting – the sequence of events in pictures which you can get free from a website http://www.do2learn.com/

Teeth brushing – for us pictures did not work as the brushing of his teeth would cause too much anxiety, crying and screaming. I find for situations like this that photos are much better. I took a complete sequence of photos of how to brush his teeth with him in the photo laminated and put up in the bathroom. I am pleased to say he now happily brushes his teeth morning and night but this has been slow progress and has taken seven years.

Christmas – This is a very special time for us but he loves it so much that he wants it to be now and gets extremely stressed because he can’t work out when it is. We use a calendar (thanks to Joan from special education). This helps us to count down the months and days, with reduced crying!

Birthdays – same as above School – we use a monthly calendar and cross off the days, we use pictures.

Holidays – we use social stories and show on the calendar with a combination of pictures and photos.

What I have worked out for us is that it is best to use photos for really stressful situations or when introducing something new so the expectation is clear. As you can see we mix this up and have had to adapt with age, comprehension and the specific situations.

I would like to thank Brenda McLeod and Joan Mills from Special Education for their dedication to my son by helping me understand the importance of visuals. I would also like to thank Central School for believing in our son and his ability; this has certainly changed my son’s life and ours as a family.For more information please contact me 06 759 1287 by Rowena Newey©

Page 8 Dec/Jan/Feb 11

Feedback from conference - social learning

I was fortunate enough to be able to attend Autism NZ’s conference “Celebrating Autism in New Zealand’, which was held in Wellington in September. I was hoping to learn more about teaching social skills as this is what our son needs at this point in time (he is 9 and has high functioning autism). Danuta Bulhak-Patterson, who is a Psychologist @ the Minds and Hearts Clinic on the Gold Coast of Australia spoke on social learning. She said “More emphasis needs to be put on social learning in schools for kids with ASD. Teacher’s have incredible power to improve social skills”. It is important to know your child’s strengths and weaknesses, friendship skill level and how they differ socially, in order to work out where to start teaching. Once you have done this you can start doing the following things;• Build acceptance of student’s unique profile and give them special roles. If they are good

with computers, make them the computer monitor etc.• Find other children who are socially skilled/kind to be mentors.• Social engineering - set up experiences with children who will help.• Develop/teach specific skills and practice repetitively. Repetition creates stronger

pathways in the brain. Teach and practice new skills - the brain will build more connections and habits.

Use social stories *encourage and reward for trying* teach how to be a friend* label prosocial behaviours “friendly”* prosocial behaviors to encourage include, sharing, turn taking, listening,

helping and compliments.Common difficulties kids with ASD have;

• Turn-taking• conversations• waiting in line• perspective taking - seeing someone else’s point of view.

Use a visual card to remind the child - put this on their desk. A visual prompt is better than an adult verbal prompt as this way the child is more independent.

Repeat daily what you are teaching. Start with pairs and then build up to group work.

Playground Issues*Create a playground plan and routine - the playground can be chaos for ASD kids*Set up a friendships station - a place to go.*Educate other kids*Structure break time *Teach compromise - I’ll play your game if you’ll play mine*Set up buddies - get the kids to take turns*Make sure the ASD child knows the rules of the game before hand - use visuals and social stories - he may tell you he knows what to do, but in the heat of the situation it is easy to forget.Visit Sue Larkey’s website on www.suelarkey.co.nz for a list of books. By Karen Glenny

Page 9 Dec/Jan/Feb 11

Coffee GroupMonday, from 10-11.30Mon 13th Dec @ Gayle’s house, 25 Parrs RoadNo coffee group in JanuaryMon 21st Feb @ Rowena’s house, 44a Waiwaka Terrace, StrandonContact - Rowena 7591287

Girls Night OutThursday once a month.Meet @ Elixir at 7.30pm for dessert and coffee.Thur 16th Dec, Thur 13th Jan and Thur 17th Feb.Contact - Karen 7512287 or 0277157751

Hawera Coffee GroupEvery second month @ Hawera playcentre. Children welcome.Contact - Lynda parata 06 2788314

ApptitudeOur Taranaki based social group is for friends, partners or family of peopleon the autism spectrum.We meet monthly for a coffee and a catch up on the second Sunday of eachmonth @ Expresso cafe in Brougham St at 2pm. Dec 12th, Jan 9th & Feb 13thAll welcome.Contact Chris O’Connor 7546222 or 0275676049

Disclaimer: The views expressed in this newsletter are not necessarily those of Autism NZ Inc. From time to time in the interest of providing the widest possible range of information to our members we may include some approaches to Autism Spectrum Disorders now available. This does not, however, imply that Autism NZ Inc. endorses any particular

What’s on inDec/Jan/Feb?

Page 10 Dec/Jan/Feb 11

Halberg Trust FundingThe Halberg Trust Activity fund will meet costs over and above what it would cost an

‘able-bodied child’ to participate in sport. Examples of funded activities include specialised sports equipment, sports activities, coaching and school camps, as well as

swimming lessons. Your child must be at least five years old.Contact John Sigurdsson at Sport Taranaki 7590930 ext 702

Moveable in New PlymouthGym class for 5-13 year olds with disabilities. Held at NPGHS in their bouncy floor gym, on Fridays at 10-10.50 & 11-11.50. Cost is $25 per term and those attending

need to come with a caregiver.

Moveable in HaweraSpecial needs gym class held at St John’s Gym Club in Burnside Ave, Hawera on

Mondays from 11-11.45. Ph 06 2786766 or you can contact Morven Woodhead at 8am on 06 2784033.

Taranaki Guide to the Gluten free/Casein free dietYou may have read that some people with ASD find removing Gluten (wheat protein) and casein (dairy protein) from their diet improves their concentration and general wellbeing. We are a group of Mums here in New Plymouth who have tried this diet

with our kids, and have found it makes a difference to them. We have put together a list of recipes and products and where you can buy them locally. If you’d like a copy

contact Karen Glenny akglenny@ihug.co.nz

If you do not wish to receive this newsletter please hit reply and put ‘unsubscribe’ in the subject line

Page 11 Dec/Jan/Feb 11

Items of interest