Centre for Early Autism Treatment

Quarterly Newsletter ~ June 2004

Dear Families, How quickly time moves on. Another three months have passed by and it is already time for another CEAT Quarterly Newsletter. So much has happened since our arrival in Northern Ireland and we are continually impressed with and enthusiastic about the changes happening in relation to the education of young children with Autistic Spectrum Disorder. In this newsletter, we hope to fill you in on these exciting changes and to share some “food for thought” over the summer months. We are pleased to announce the arrival of Liana Maione, our first Programme Supervisor. Liana joined us at the start of June from Vancouver, Canada. She has quickly learned to drive on the “other side” of the road, to enjoy the Northern Irish hospitality (despite her dislike for hot drinks) and to work diligently as part of the CEAT team. Her arrival has allowed us to offer more intensive supervision to a number of families and teams in the Belfast area. Once again, it has been a busy month of training, both by and for CEAT Consultants. We enjoyed hearing Liana present her recent research on the use of “Video Modeling to Promote Social Language” during an open night at the Ramada Hotel. Nearly fifty people joined us as we discussed this practical and exciting approach to teaching our children. We are also proud to have conducted our fourth Orientation Seminar in Portadown, giving another twenty-five people introductory training in the use of Discrete Trial Teaching within the context of our home-based programmes. Finally, we’re pleased to have attended the 30th Annual Association for Behaviour Analysis International Convention in Boston, USA. We attended numerous workshops, talks and symposiums and were exceptionally excited to learn more about the recent developments in the field. We also had the opportunity to hear Dr. Lovaas speak, which was particularly exciting and informative. So, as you hang up your children’s school uniforms in preparation for a long summer, we too are gearing up for two months of hard work, play and fun with peers. We are looking forward to seeing you soon and wish you the best for a positive and productive summer term. Kimberly and Mary

PEAT’s PEACEFUL PROTEST

On a sunny Saturday afternoon, on the 22nd of May, diligent members of PEAT (Parent’s Education as Autism Therapists) marched the streets of downtown Belfast and Derry to promote Autism Awareness Week. We were proud to be a part of this continued effort to educate the public about the need for appropriate educational provision for children with A.S.D.

For more information on PEAT, please visit their website at www.peatni.org or email at peatni@aol.com.

Centre for Early Autism Treatment

21 Laganvale Manor Stranmillis · Belfast

BT9 5BE

Phone: 028 9066 2651 · Fax: 028 9066 2804 Email: information@ceatni.net

Centre for Early Autism Treatment

is proud to present its first

Intermediate Therapist Training Seminar

Topics to Include: Discrete Trial Teaching: Beyond the Basics

Reinforcement: Beyond “Good Job!” The Art of Prompting and Prompt Fading

Shaping and Chaining Data Collection: Efficiency, Effectiveness and Accuracy

Session Management: Competency and Organization Creativity, Energy and Interaction

Coming soon to a hotel near you, August 2004.

The National Autistic Society

We are pleased to welcome the first Northern Ireland

Branch of the National Autistic Society. We appreciate and support the N.A.S.’s aim to increase

awareness of A.S.D. and to help parents make informed choice about treatment.

Toilet Training: Cahir’s Story Toilet Training. Two words which strike fear in the hearts of parents with a child with autism. I had put off the dreaded deed long enough. Cahir was 3 ½, the time had come. I told my husband Paul that Wednesday, the 8th of March would be one D. Day. I could see the blood drain from his face as his mind quickly, frantically, tried to think of excuses not to do this. “Climbing Mount Everest, swimming the channel, ironing” were some of his replies! Obviously, nerves had the better of him. That evening I spoke to CEAT. I told them I was ready to tackle toilet training with Cahir. We spoke at length over the phone and the written programme was emailed to me the next day. I knew once started, there could be no turning back. Day 1. Monday came and start it we did. Armed with our portable potty, Barney and Walt Disney videos, toilet roll and wipes, we sat Cahir in front of the TV. For two days solid. Our child sat on the potty until he did a little pee; he was then given a break for ten minutes and then put back on his throne again. I will neve r forget the sound of his first dribble in the potty. You could have sworn that we had won the lotto. My husband and I and our older child Claire shouted and praised Cahir until we were almost hoarse. Hands clapping, high fives, dancing around the living room, we did it all, and all to the amusement of our four-month-old baby girl. After the first two intense days of the programme, Cahir was doing his pees both on and off the potty. Days 3, 4, 5 and 6, the same pattern continued. Cahir’s legs were red-raw from sitting on the potty. My determination to see the programme through was strongly being tested. Day 7. I couldn’t take it anymore, I feared that one more accident and one more session of mopping up would finally break my spirit. . I sat and cried, believing the programme to be doomed to failure. I picked up the phone to CEAT to try and explain that I just couldn’t go on with this intense programme. They were not to be deterred. Their words of encouragement, experience and enthusiasm promised the programme would work, time and patience would reap reward. Our conversation soon had me wiping away the tears, taking deep breaths and filling the mop bucket once again, ready for the next accident. Each day after that the accidents became less and less. Each day the data was recorded and talked over with CEAT. Our reinforcement strategy changed several times as Cahir took control of his body functions. Cahir was now doing most of his pees in the potty. Day 16, day 17, I could now begin to feel that our son was getting to grips with the idea of using the potty. I could hardly believe it myself. As each day passed, continuous pr ogress was being made. The poos were another issue. That Cahir was saving mostly for his nappy at night, with the odd accident during the day. Day 20, “no pee accidents” was recorded in my data book. I could hardly see through the tears to write these beautiful words in a straight line. With his continued success we moved Cahir’s toileting from the potty to the toilet with no problems. We now take Cahir to the toilet at regular intervals, until such times as he can go independently. Remembering that “visible nappy line” whilst he played in the park is now thankfully a fading memory. Our son is grown up, he stands tall and slim and my heart swells with pride when I think of what we all came through to reach our goal. We still have a few more hurdles to cross when dealing with the poos, but I believe we will get there – It is only a matter of time and of course . . . patience. Bridgeen O’Hagan, Cahir’s Mum

My Brother Ben

Written by: Tara, Aged 6

Winner of:

The Limerick Education Centre Distinction Award Write-A-Book-2004

___________________________________________________

My brother Ben is very special. He is autistic. He sees the world different to us. He has school inside the house. He works in the sitting room. He has five teachers. He is going to get better and go to school just like me. He is going to be able to do all the things that I can do. But he will always think different. I like Ben just the way he is.

No More Nappies !

Congratulations to Our Potty Training Grads!

Sean

Cahir

Fionnuala

Connor

Enda

Sarah’s Summer Craft Ideas

Sarah Lavery ~ CEAT Intern

What exactly is A.B.A in the context of a home-based “educational” treatment programme? This seems a bizarre question to ask considering that these three letters dominate our daily life. However the buzzing sentence that is common among the majority of parents is “We are doing A.B.A.” Our question is, “What are you doing with it?” Saying that “We are doing A.B.A.” is as specific as saying that you are “doing exercise” to keep healthy. There are many different types of exercise programmes, not all are suited for every individual and none should be started without a clear understanding of what level and specific exercises are appropriate for each individual. You would not start to train for a marathon by running 26 miles. This same idea applies to A.B.A. Applied Behaviour Analysis is a science with regard to behaviour; that is, all of our behaviour, not just the deficits and excesses of children with an autistic spectrum disorder. However, over the past 40 years clinicians have used the principles of A.B.A. to address the learning deficits and behavioural extremes of children with A.S.D. They have developed different teaching techniques by using the principles of A.B.A. These techniques differ in their approach, presentation, and data collection procedures. However, they all work on the premise that the event that occurs after a specific behaviour affects the likelihood of that behaviour reoccurring. A.B.A. is highly acclaimed and often the parental “treatment of choice” because it is the only scientifically validated approach to teaching children with A.S.D. It provides for the on-going evaluation of behaviour change in order to ensure that we are constantly assessing the effectiveness of teaching. The only approach that uses A.B.A. to teach children with A.S.D. that has been put to the ultimate test is the approach most commonly referred to as “Lovaas,” or the “UCLA Model.” In his pioneering research, Dr O. Ivar Lovaas used the “discrete trial teaching” format to target a hierarchy of skills, all of which build upon each other to increase a child’s behaviour in the areas of communication, language, observational learning, play, academics, general knowledge, social and independent living skills. Dr Lovaas also developed a curriculum through which children progress by having concepts and skills taught individually and systematically. The Centre for Early Autism Treatment specializes in the provision of intensive, educational home-based programmes that are based on the principles of A.B.A. and the work of Dr Lovaas. When establishing early intervention programmes, CEAT uses the “Lovaas Approach” to educating children. All CEAT clinicians have received training at a Lovaas replication site or affiliated clinic. As our children grow and change, so too do their learning needs. Treatment is individualized to ensure that goals are met through a data-driven behavioural teaching approach. Techniques such as verbal behaviour and fluency-based teaching may be used. All CEAT clinicians have received training in both of these approaches. However, like exercise, the goals of intervention are first established before the appropriate strategy is identified and implemented. Parents of children with A.S.D. face many decisions in their efforts to enhance and promote their child’s development. In some cases, they may establish the reduction of a particular behaviour as an isolated goal, choosing A.B.A. as the strategy by which to do so. Alternatively they may identify the need to teach an individual skill, again for which A.B.A. is appropriate. On the other hand, some parents seek the provision of a comprehensive education plan, with goals that relate to the increase in communication, cognition, play and social skills and to the decrease of specific behavioural excesses. If in fact a comprehensive education is the goal, then home-based treatment based on Dr. Lovaas’ model is most appropriate and is in fact the only scientifically validated approach to educating children with A.S.D.

Puffy Paint

Equal parts flour, salt and water Liquid tempura paint in desired colours Cardboard squares or heavy paper Plastic squeeze bottles (e.g. ketchup bottles)

Mix flour, salt & water & add the tempura paint until desired colour is achieved. Pour into squeeze bottle. Squeeze onto the cardboard or heavy paper and it will harden into a puffy shape. A washable liquid tempura paint is available from www.stencilhouse.co.uk.

Bubble Pictures

Attach some thick paper to an outside wall or fence at children’s face level. Mix some paint with bubble solution to make up a variety of colours. The children can now blow bubbles onto the paper to make some very pretty bubble pictures! A variation of this is to put the paint and bubble solution into a plastic cup with a straw. The children can blow through the straw to create a bubble tower. Place a piece of paper on top of the tower and the bubbles will burst leaving bubble imprints.

Car

Draw and cut out a car silhouette and 2 discs of card for wheels. Decorate the car body and wheels and once completed punch holes through the middle of the wheels and the body of the car. Fasten the wheels to the car using split pins. You can also find lots more great ideas on www.freekidcrafts,com and www.enchantedlearning.com.

Have fun!

Gluten-Free-Casein-Free Play Dough

1 cup rice flour 14tsp cream of tartar 1 cup corn starch 2tsp oil 1 cup salt

Combine all the ingredients in a pot and heat until they form a ball. This should take approximately 10 minutes. When the mixture is cool enough, pat it smooth and store in an airtight container. The play dough will become softer with play.

The Association for Behaviour Analysis 30th Annual A.B.A. Convention, Boston, Massechusetts, USA

Kimberly and Mary attended The 30t h Annual Convention of the Association for Applied Behaviour Analysis in Boston, USA, from 28th May to 1st June. The conference offered the Directors of CEAT the opportunity to expand their knowledge by receiving on-going training by leading professionals in the field of A.B.A. They attended a variety of symposiums and workshops, including but not limited to the following. Integrating A.B.A. and Speech Pathology: This 6 hour seminar was presented by Dr Joanne Gerenser, Executive Director of Eden II Programs, Staten Island, New York. This excellent seminar brought together the skills of Speech-Language Pathologists and Behaviour Analysts to discuss the advancement of oral motor development, verbal skills, vocabulary development, abstract and social use of language. It is reassuring, whilst at the same time unfortunate, that the division between the two professions is distinctly evident on both sides of the Atlantic. The speaker joked that as a Speech Therapist, she was actually more welcome at the A.B.A. Conference than at the equivalent Speech-Language Pathology Conference. Whilst a majority of the seminar focused on the development of speech or the teaching of augmentative communication systems, for example, PECS and Sign Language, the work of the Eden II Project provided many examples of creative strategies for developing a child’s ability to attend to the facial expressions and body language of their teacher. Further to this, Dr Gerenser presented “fast mapping,” an alternative approach to teaching object labels and discussed in length the importance of “semantic” mapping in relation to the retention and retrieval of language, or in other words, the ability to associate many characteristics to the one item. A.B.A. Strategies with Toddlers: This three hour seminar was presented by Anne S. Holmes and Diane Van Driesen of the Eden Family of Services. The two speakers had been working together for the past 25 years in the advancement of early intervention services to children within the New York area. Their experience led them to evaluate the various interventions available for toddlers with autism. They put forward that a solely child-directed approach to intervention in ineffective due to the fact that toddlers have extremely limited interests. However, they also suggested that a solely therapist -directed approach is ineffective due to the fact that toddlers are not being taught to experiment and explore their world. Instead, Anne and Diane promoted an A.B.A. approach that is child initiated, adult directed. Advanced Comprehension, Production and Social Skills Programs: This three hour workshop was presented by Dr Eric Larsson and Kara L. Riedesel of LIFE-Midwest (Lovaas Institute for Early Intervention). The workshop was an excellent and exceptionally informative presentation which was truly inspiring. It was testament to the fact that the A.B.A. and the Lovaas approach is at the forefront of the effective teaching of children with ASD. The Lovaas Institute itself is constantly evolving and advancing the programming for auditory comprehension, creative language production and social language skills. The emphasis of the presentation was on the facilitation of spontaneous language in play and social contexts. Whilst the basis of the teaching was through the discrete trial format, the majority of the learning took place away from the table and within a play context in order to generalize the skill into a natural setting. There was a strong emphasis on developing a child’s ability to narrate figurine play in order to facilitate the spontaneous use of language. This is an area of programming that we will look to develop through video modeling over the next few months. Writing a Quality Behavioural Intervention Plan Based on a Functional Behaviour Assessment: This three hour workshop was presented by Laura Riffel, PhD of the Behavioural Intervention Programme. The workshop provided a presentation, discussion and hands-on-practice using the ABC Data Collection System to conduce a functional behaviour assessment. Participants practiced analyzing data, identifying the function of a target behaviour, and designing a Competing Pathways Chart. The establishment of competing pathways assists in our understanding of the relationship of the behaviour chain and how to break the behaviour chain by identifying and teaching replacement behaviours. This seminar offered clinicians quick and easy ways of collecting and analyzing data so that behaviour change procedures may be put in place as effectively as possible. Using Skinner’s Verbal Behaviour To Analyse Pure and Improve Verbal Operants to Improve Communication – Training Interventions: In short, this three hour workshop provided a means of analyzing communication goals and teaching procedures in relation to Dr. Skinner’s work in Verbal Behaviour. In doing so, the clinicians learned to review goals placed on Individualized Education Plans to ensure that clear and appropriate objectives are included. We then learned to review and analyse language training sequences to ensure that the most efficient teaching procedures were being used. Most importantly, this presentation reminded clinicians to establish goals, use appropriate strategies to reach that goal, and to constantly review data, procedures and progress to promote effective learning.

Centre for Early Autism Treatment

Quarterly Newsletter ~ September 2004

Dear Families We hope that you all had a lovely summer; it certainly has gone by quickly. All of us at CEAT have had a very busy few months. We have helped our children with their summer programmes, have met even more families and children, and have continued our attempts to provide education and training to families and professionals in Northern Ireland. It is becoming quite clear that our ongoing efforts to share information on the use of early intensive behavioural intervention is not only helpful but essential. Many of our families continue their ongoing struggle to gain support from their education and library boards. Some of our families are seeking funding through judicial review, while others are going to special education tribunal. Such a considerable amount of time and energy is being put into these efforts. Thus, we would like to offer you support by sharing information on how families in other parts of the world have come together to seek funding from government agencies for home-based treatment. We are pleased and proud to offer you the wise words of Dr. Sabrina Freeman, parent of a child with autism, Executive Director of Families for Early Autism Treatment (FEAT) of British Columbia and Head of the Auton Legal Steering Committee. Dr. Freeman, who also authored the books Teach Me Language and Science for Sale in the Autism Wars, has written a summary of British Columbian’s journey through the funding maze. The Centre for Early Autism Treatment is committed to the search for funding and will do everything we can to support you in your individual endeavours. We have also altered the nature of CEAT as a company; we are now a non-profit making organization and will continue our efforts to make our services exempt from V.A.T. Further, we will continue to provide ongoing training to our families, their treatment teams and other professionals. Kimberly and Mary

The Impact Trust

Improving the Future for Autistic Children Today The Impact Trust has teamed up with the Camowen Partnership to facilitate the opening of a Pilot Scheme Autism Unit at St Columbkille’s Primary School in Carrickmore. The unit, The Impact Centre, opened its doors on 20 September with four students in attendance. Each child has 1:1 support and an individualized curriculum to meet their needs as outlined in their Statement. The Impact Trust hosted a Charity Night at Clubland in Cookstown to raise money for the centre. As the patron of the trust, local celebrity Malachi Cush performed live on stage to the delight of a full house. He is pictured below with parents from The Impact Trust and the Principal of St. Columbkille’s Primary, Mr Peter Cush.

For further information on The Impact Trust contact: The Camowen Partnership Limited

The Milestone Centre Carrickmore, Co. Tyrone

Phone: 028 8076 1339

Centre for Early Autism Treatment

21 Laganvale Manor Stranmillis · Belfast

BT9 5BE

Phone: 028 9066 2651 · Fax: 028 9066 2804 Email: information@ceatni.net Website: www.ceatni.net

Centre for Early Autism Treatment

is proud to present its first

“Manding” Training Seminar 23 October 2004

Topics will Include:

What is Manding ?

Why teach a child to Mand ? How do we facilitate Manding ? Data Collection for Manding

Please complete and submit enclosed flyer if you would like to attend.

ENSURING THE TREATMENT RIGHTS OF CHILDREN WITH AUTISM Greetings from Canada! I have often heard that parents of children with autism in the United Kingdom and Europe are forced to engage in the same horrendous struggle we have here to secure autism treatment funding for their children. We have been advocating for this same cause in Canada for many years and are now awaiting a Supreme Court of Canada ruling on this issue (the landmark Auton case 2000, <http://www.featbc.org/legal_issues/> Two lower court rulings in the Auton case have affirmed government’s obligation to include children afflicted with autism in the publicly funded health care system for their CORE health need. The treatment protocol was proven in court to be medically necessary treatment for autism, developed by Dr. Ivar Lovaas at the University of California, Los Angeles (Lovaas-type ‘ABA’ from UCLA). I understand that some parents of children with autism in Northern Ireland may now be just starting out on the long autism advocacy journey. I would like to share with you our roadmap to help ensure that children with autism in Northern Ireland receive the medically necessary autism treatment they so desperately need and deserve as their fundamental right. Step 1: Come together and establish a parent advocacy organization, such as Families for Early Autism Treatment of Northern Ireland (FEAT-NI). Set up a web site and web-based discussion forum for members (see www.featbc.org as an example). Allow cost-free membership into the organization for both parents and professionals who support only science-based autism treatment. All other autism issues or fringe therapies should be dealt with by other organizations, such as any currently established, generic autism societies. The key to success here is to focus in like a laser beam on a very specific goal: public funding for science-based autism treatment, delivered to all children with autism for whom medical experts have prescribed medically necessary auti sm treatment (the child’s pediatrician, psychiatrist or psychologist). Parents need to start writing letters that make an appeal to all levels of the civil service and Parliament, demanding that intensive behavioural treatment for your children be included and covered by the country’s national health care system. Autism is an acknowledged health issue and must be regarded as such in Northern Ireland’s health policies, in sharp contrast with the typical government structure that’s built upon the anachronis tic view that autism is an untreatable and hopeless condition, relegated to the purview of the Ministry of last resort – social services. Step 2: Write technical briefs to your politicians about solutions to the autism problem, detailing the lack of treatment for children with autism. Please feel free to download numerous briefs available from the FEAT-BC web-site – HYPERLINK "http://www.featbc.org" www.featbc.org -- and customize for Northern Ireland. Send those briefs to all politicians and go -- brief in hand -- to your national representative, prepared to explain the problem and its solution.

Step 3: Ask your local political representative to present a private member’s statement (or a private member’s bill) on the floor of the legislature that mandates inclusion of autism treatment for children in the nation’s universal health care system. If you can get a politician to support this noble cause, you will receive publicity, which may in turn help effect change.

Step 4: Find a parent volunteer who knows how to write and “fax-blast” press releases to all media outlets. At first the media will ignore your cause; however, eventually you will get the publicity you need to hopefully effect some change. Producers for talk radio and editors of local papers are often the entry points for early publicity.

Step 5: Once all the politicians and civil servants have shown they are not willing or able to make the changes required to facilitate publicly funded, medically necessary treatment for children with autism, either by continuing to ignore you or by declining your numerous requests, then it’s time to consider the courts as a last resort. Step 6: Organize a lawsuit. This takes some coordination; however, it may ultimately be the only way you can fight for justice for your children once the politicians have shown that they have no intention of changing government regulations to allow your children into Northern Ireland’s health care insurance system. The first step in organizing a lawsuit is to find a core group of parents committed to steering the lawsuit. It is preferable that a few of these parents be lawyers themselves and are prepared to sit on the legal steering committee. In addition, parents who are seen as trustworthy by the larger group of parents in FEAT-NI need to sit on the steering committee as well. Next, it is important to find a good lawyer from a large firm who will represent your families pro bono. You will still need to raise money from parents in the group to cover legal disbursem ents; however, if the senior lawyer agrees to represent your children pro bono, this will significantly help control costs. For details on how to organize the financial aspects of an autism treatment court case, as well as any additional questions you may have, please do not hesitate to contact me directly at skfreeman@featbc.org or phone 604-534-6956. A senior lawyer can be convinced that this is an interesting and important case by downloading the Auton decisions from our website and presenting them to him face-to-face. In addition, in certain parts of Britain there are already several legal precedents in line with this very issue. To sum up, the only way to ultimately force governments -- and their typically intransigent civil servants -- to deliver justice for children with autism, is to have the judiciary compel them to provide science-based autism treatment. I understand that all this may at first appear to be an insurmountable, Herculean challenge – David vs. Goliath – but please know that ALL is possible if there is a sincere desire and a deep commitment to see that justice is done for our children. As parents of children afflicted with autism, it’s our duty to advocate for their health and well-being -- this is their right and our solemn obligation. Good luck! _________________________ Sabrina K. Freeman, Ph.D. Executive Director, Families for Early Autism Treatment of BC Head, Auton Legal Steering Committee

C

INTERMEDIATE THERAPIST

TRAINING SEMINAR

On 14 August CEAT conducted its first Intermediate Therapist Training Seminar. Over 35 participants attended the six hour workshop which was held at the Seagoe Hotel in Portadown. The seminar was well received despite the fact that everyone was put through their paces with a discrete trial quiz, data assessments and a video analysis exercise. All participants brushed up on their use of prompting, reinforcement and data collection procedures. We would like to host another Orientation Seminar and Intermediate Therapist Training Seminar in the near future. If you would like to attend or have members of your team attend, please bring this to the attention of your Consultant or Programme Supervisor.

Congratulations Sarah Congratulations to CEAT’s first home-grown Programme Supervisor. Sarah Lavery has completed her six month training with CEAT and will join our clinical team as from 1 October. Sarah has worked diligently throughout her training which included four team placements, twelve case studies, eight assignments, a two day ABA conference and a three day stay with a family and their child with Autism. Combine her training with five years experience of ABA / Lovaas therapy and a Masters in Applied Psychology and you have a very well qualified Northern Irish Supervisor.

CEAT Programme Supervisor, Liana Maione enjoys helping Jonathan and his brothers work together to build a house of sticks.

PEAT FAMILY FUNDAY Several families from CEAT and PEAT met up on a windy Saturday afternoon in August for a picnic and walk through the Ulster – American Folk Park in Omagh. Kimberly, Mary and Liana joined them all as they walked through the historic buildings, climbed aboard the galley ship and built houses of sticks. Good fun was had by all.

For more information on PEAT (Parent’s Education as Autism Therapists)

please visit their website at www.peatni.org or email at peatni@aol.com.

We are pleased to introduce our recently developed logo and motto. We chose a bird to signify our aim to help our children to grow their own wings as they work towards achieving their highest potential.

We have a son called Paul . . . We removed him from school in June 2003 when he was 6 years old and began an intensive home programme. When we started our programme, Paul had many behavioural issues and far too much attitude! That was preventing him from learning; so our CEAT consultant decided to set up behaviour management strategies. These included Paul identifying things that he had a choice about and not a choice about, a visual system which rewarded Paul for good behaviour during daily activities in the home and token systems which taught Paul about the consequences of good and inappropriate behaviours. The “Choice and Not a Choice” programme was a simple matching task which required Paul to match photos of choices (e.g. food, videos, play station games) to a choice board; he also matched to a Not a Choice board, things that are not a choice (hitting, biting, spitting) and all the other nasties! Paul was quick to learn these and soon was able to recite all the choices and no choices. We also introduced a Token System with happy and angry tokens. We introduced this system to help with activities such as washing, dressing and going to bed. Paul was reluctant to do any of these happily! Paul would receive a token that corresponded to the way he carried out the activity. So if he got washed and was happy about it he received a happy token and if he was angry he got an angry token. At the end of the day we counted each of the tokens up and he would receive a reward that equalled the number of happy tokens. Paul’s main reinforcement at the end of each day was watching TV in bed, so in order for him to get this he had to get all of his happy tokens. D-Day arrived and we introduced these systems to Paul and he went mad when he didn’t get his TV. At this point I wanted to phone Mary and ( beep..!) However we stuck with this and within three days Paul started to catch on and his behaviours decreased. After eleven days Paul’s behaviour was dramatically reduced. Although he would try it on, I only had to say “are you going to be happy or angry” and Paul’s behaviours would settle so he could carry out the activity. Now he washes and dresses himself and goes to bed without any fuss. He sometimes comes to me when he has washed himself and says “Look Mummy I’m sparkling clean!” We went on holiday this year and left the token system at home and he was brilliant! Paul did make great changes however he still didn’t understand that both good and bad behaviours had consequences. We had been using positive reinforcement through a token system for good behaviour (transitioning well, good talking etc) but Paul was still engaging in inappropriate behaviours especially during work time. So our CEAT consultant introduced a response cost system, which allows us to take a token away from Paul for engaging in inappropriate behaviour. I took pictures of outings that were reinforcing to Paul, including swimming, shopping, park etc. I recorded how often Paul engaged in inappropriate behaviours (which was up to 16-18 per day) and then cut the pictures into 20 pieces like a jigsaw.

cont . . . Paul started with the complete picture; every time he engaged in inappropriate behaviours a piece was removed. Paul still received his reinforcement even if he had one piece left. The first time we did this Paul threw a chair; I removed a token then he started hitting me. I continued to rake tokens off at 30-second intervals until the behaviour stopped. He had eight tokens removed and he stopped. Paul received the reinforcement at the end of the day because he had tokens left. As the weeks went on I was able to reduce the number of tokens on the picture. Therefore I was reducing the number of opportunities Paul could behave inappropriately. His jigsaw boards are now only 4-5 pieces and he rarely loses all the tokens. He usually settles after losing only one or two tokens. It’s stupid now when I think to myself but I once thought Paul’s learning difficulties were so severe (and might I add so did his Education Psychologist from the education board), that Paul would never learn. I hadn’t realised what an impact behaviour had on my child’s learning ability. I know Paul will be no Rocket Scientist, but it is a joy to watch Paul’s personality shine through and for him to gain the ability and the communication skills needed for Paul to make sense of this world, that he once found so difficult to live in. Ruth Murray, Paul’s Mum NOTE FROM CEAT: The strategies described are specific to Paul. Do not implement these or any other behaviour reduction strategies without discussing them with your consultant first.

In September Keith and Ruth Murray took the South Eastern Education and Library Board to Tribunal to request t hat the Board fund Paul’s full-time, home-based A.B.A. programme. Over the past nine months a camera man from the BBC has been following this story. A documentary on the Murray’s fight for funding will be shown on BBC 1 on 6 October, 9 p.m. – 10 p.m. After the news there will be a live discussion on the Steve Nolan Show in connection to the topic of the documentary. The shows are definitely something not to be missed! If you wish to contact Ruth Murray to find out more information you can e-mail her at r.murray10@ntlworld.com.

B B C

Centre for Early Autism Treatment

Quarterly Newsletter ~ December 2004

Dear Families This is a very significant newsletter for all of us here at CEAT. It completes the first year that we have been established in Northern Ireland. We continue to be impressed with the continued dedication parents and families are offering their children and their education programmes. It has been a wonderfully productive year for our children and indeed for CEAT as an organization. As the year has progressed we have made every effort to keep you all up-dated with the changes within CEAT; one of our priorities is to always maintain a collective identity for the families of CEAT and for everyone to feel as though they are part of an on-going and progressive organization that aims to provide the most effective teaching for children with autism. We are delighted to have been able to reach so many families within one year; CEAT now provides services to over 50 children. We are very proud to have established a Centre that is able to offer an intensive level of supervision to home-based programmes. Our first Programme Supervisor, Liana Maione, made a significant life change by moving here from Canada in June; she has become a key contributor to the development and provision of the centre. As from January 2005, Liana will assume the role of Clinic Supervisor, through which she will oversee the Programme Supervisor Internship and further Training Seminars. Our first local Supervisor, Sarah Lavery, has made an impressive start as a Programme Supervisor and we are thrilled t o have her on the CEAT team. Training is a vital part of CEAT’s mission. Over the past year we have provided three training seminars on basic Discrete Trial Teaching, one full day on Intermediate Discrete Trial Teaching and two on Mand Training. In 2005 we intend to continue to provide full day and evening training classes, including training in the areas of Advanced Discrete Trial Teaching, Social Interaction and Play, Behaviour Management and Lead Therapist Training. We have learned many things over the past year. Perhaps the most prominent for us is the amount of confusion that exists around the subject of Applied Behaviour Analysis. Our priority for 2005 is to further increase awareness of A.B.A. as a science and the ways in which it is used to teach young children with A.S.D. We intend to conduct a series of information evenings throughout Northern Ireland in an attempt to break down barriers, clear up misconceptions and promote the importance of providing young children with ASD with early, intensive behaviour treatment programmes. From all at CEAT we wish you a very peaceful Christmas and a progressive New Year. Kimmy and Mary

Centre for Early Autism Treatment

21 Laganvale Manor Stranmillis · Belfast

BT9 5BE

Phone: 028 9066 2651 · Fax: 028 9066 2804 Email: information@ceatni.net Website: www.ceatni.net

Happy Holidays from Fionnoula, Aged 4

To Santa, From Eoin, Aged 6

UNITED WE STAND By: Brian and Jo Nolan With an almost religious fervour (appropriate to this festive season), we, as parents of a child with autism, have fought “the system” for our child’s right for appropriate one-to-one education. In our case, as in many other cases, this has meant going it alone and educating our son at home. The nature of home education dictates that our days are filled with endless tasks, which often make it impossible to look beyond the next session. We’re so focused on the details that it is hard to look at the big picture -- and the big picture can be scary. But, we must look at the big picture : the system must be challenged and only we, as parents, can do it. Since the option of politically challenging the system is still too remote, the only real avenue open to us is the legal one. We are the parents of a five year old boy with autism. After 18 months, following his first assessment by the Board’s educational psychologist, we are still battling over the statement. Therefore, we have gone to court and have started judicial review proceedings against the Board, on the basis that their policy of refusing to support home-based ABA programmes has not considered our child’s individual needs. In legal-speak, we are arguing that they have “fettered their discretion” – that is, they have closed their minds to the merits of our son’s case by hiding behind a blanket policy of refusal to back ABA. We are also castigating the entire statementing process by highlighting all of its flaws in order to illustrate how this system fails to address the needs of our children. We have also been busy launching another judicial review action against the Health Trust for their complete failure to provide Occupational Therapy over the last 18 months, even though their own experts agreed that it was necessary and recommended it. Without getting into the gory details of each of these actions, the thrust is simple. In both cases, the Board and the Trust have failed our child by: (a) not diagnosing our child’s needs properly; and (b) consequently failing to provide the required resources or services to meet these needs. The Board allowed the educational psychologist to perform an initial shoddy assessment and then based its conclusions on this. Although we questioned this many times, nothing was done. Eighteen months later, under the spotlight of litigation, they are now reassessing our son (with two educational psychologists over the space of about 10 hours each!), but it is too late. In addition, our Board has stated that they have a policy of not supporting ABA; but, they still claim to look at the individual needs of each child. This statement is certainly contradictory, so we’ll let the judge decide. The case will be heard in January we hope. Our Trust, over the last eighteen months, has failed to provide our son with any Occupational Therapy. The initial reason given: his school was not in their catchment area and it was another Trust’s responsibility (which that Trust of course denied). We then took our son out of school to start our ABA programme and this retrospectively has given the Trust the opportunity to change tack. Now they are arguing that they won’t provide Occupational Therapy because they believe that OT can only be effectively provided in a school environment . So the Trust is using our choice of education as a reason to deny him access to a medical service! This obviously has major implications for those of us who believe that parents should have the right to choose an effective education for our children. This case will be heard in February. We have all no doubt experienced that “look” of pity from teachers, doctors, and even friends and family – that look of: “why don’t you just give in, why do you bother?” The answer is simple: we want the best for our children, even if we have to fight tooth and nail to get it. And what do we want? We want recognition of our child’s right to an effective education and our right as parents to have a choice in that education. But this is a cause we must all join in together. Just a few families taking on the system will change nothing. However, if we can get sufficient numbers of parents coming forward, it will be more difficult to ignore us, and the Boards will realise we are not to be fobbed off. So, GET ORGANIZED - gather evidence – collect a paper trail i.e. follow-up telephone conversations with letters, and put all complaints in writing AND keep copies of all correspondence and notes of telephone conversations. Contact a solicitor. You will have to pay for the first meeting, but make sure you ask the solicitor to apply for legal aid in the name of your child (the solicitor will go over the grounds to see if your child meets the relevant Legal Aid criteria). This is a new, exciting development; the Legal Aid Commission will now consider legal aid for actions taken on the child’s behalf in these types of cases. Every case launched helps to weaken this flawed system. And with enough cases, who knows, maybe the Boards will have a major rethink and decide it is cheaper to start to work with us and with our children, rather than against us. Happy Christmas and all the best for the New Year!

The Centre for Early Autism Treatment welcomes parents and professionals to use our newsletter to put forward their views on the educational provision for children with autism in Northern Ireland. Should you like to submit an article, letter or story, please contact us at information@ceatni.net

We would like to introduce you to a therapy team that is working very hard in Zamiba, Africa. They are a strong team of five women who are educating a little boy named Conor. While they are a world away, they are not a world apart. They enjoy the same success and face some of the same challenges as we do in running a home-based education programme. They have supervision for only a few days every three months and miss the regular contact that families and therapists in Northern Ireland enjoy as part of a community. In March, a member of this team will be coming to visit some of our children and programmes. Please give her a warm welcome when she arrives.

Out of Africa

Greetings from the Impact Centre St. Columbkille’s School, Carrickmore We have had a very exciting start to our school year and would like to thank you for your continued support with the fundraising for and the development of our classroom. We have been hard at work doing our Programmes in the Centre and enjoying time with our friends at St. Columbkille’s Primary School. From all the children and staff at the Impact Centre, we would like to wish you a very happy holiday season.

Programme Supervisor Internship We are pleased to announce the start of our second CEAT Supervisor Internship. Through the internship programme, we have the opportunity to train loca l therapists to provide support to families as CEAT Programme Supervisors. This will allow us to reach more children on a more intensive basis throughout Northern Ireland. Three interns will be joining us in January 2004. They will participate in a co mprehensive four-to-six month training programme that includes: four team placements, bi-weekly coursework, twelve case-studies, six written assignments and an overnight stay with a family with a child with autism. Our interns are: Julianne Bell Julianne studied psychology at Queens University of Belfast and has five years experience working as a Lead Therapist on behaviour treatment teams. She has been instrumental in the development and training of treatment teams under the Workshop Model of Supervision. Kirsty McCartney Kirsty studied Applied Social Studies, including psychology and Special Needs, at Manchester Metropolitan University. She has extensive experience working as a Classroom Assistant in both mainstream and special schools and has five years experience working as a Lead Therapist on behaviour treatment teams. Jeanette Bell Jeanette studied psychology and has a further master’s degree in English Language and Linguistics from the Queens University of Belfast and has five years experience working as a Lead Therapist on behaviour treatment teams. She is currently pursuing an additional master’s degree in Special Education with emphasis on Autistic Spectrum Disorders.

Merry Christmas and Happy New Year

From some of CEAT’s Children