centre for early autism treatment Quarterly Newsletter ~ February 2006
Dear Families, A few weeks ago it was the arrival of our third television license that prompted us (that is a visual prompt) to reflect on the fact that CEAT is now entering its third year. When we first met with families in Northern Ireland in August 2003 (you know who you are!) and then moved over here to set up in January 2004 (though a few doubted we would!), we never quite realized what we were about to start and what we were about to experience. We had been asked by a parent-run charity, to develop a Clinic for Northern Ireland, one that would provide children with home-based intervention based on those principles of ABA (remember we do not “do ABA”, we use the principles of the science). Since then, CEAT has provided programmes and advice to over 100 children; currently we have an average of 65 running programmes at any one time and we are involved in the co-ordination of two school projects. We have built up to a staff base of seven clinicians who provide the level of supervision that is outlined in the research studies; such supervision is crucial if our children are to achieve the results that they are truly capable of achieving. Looking back it has been an amazing two years, and so in turn we have to start looking to the next couple of years and consider what changes we hope will take place that will redefine the face of CEAT in Northern Ireland. Change is sometimes inevitable and we know from experience that change is not always easy or understood by families, however please be assured that we are making all upcoming changes carefully and with confidence that they will result in a positive impact on each child. This newsletter will foreshadow just a few of the exciting changes that will be taking place over the next year; we will be sure to keep you posted as new ideas and endeavors emerge. This Newsletter is one of our most exciting yet. We have great news from abroad, a Tribunal success, another Training Day to attend and new people to introduce to you. Happy reading! Kimmy and Mary
DR GLEN SALLOWS Dr Glen Sallows, Director of the Wisconsin Early Autism
Project (WEAP) will be providing consultation to CEAT children in March 2006. Dr Sallows has extensive experience in the field of autism and Applied Behaviour Analysis. He is a
clinical psychologist and Board Certified Behaviour Analyst (BCBA); he studied with Dr. Lovaas at the University of
California – Los Angeles prior to starting the Wisconsin Early
Autism Project, a leading replication site for Dr. Lovaas’ research. Since 1994, Dr Sallows’ work in Wisconsin has reached hundreds of children and families world-wide, through both research and private practice. His research efforts have
resulted in the recent publication of his study, “Intensive Behavioral Treatment for Children with Autism: Four Year
Outcome and Predictors” in a leading peer-reviewed scientific journal.
The results of this study reveal outcomes similar to
those of Dr Lovaas in his original 1987 study. CEAT is
delighted to be affiliated to a replication site and to provide the intensity and quality of service that is necessary for children to achieve results that are outlined in numerous research articles.
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
Liana’s Journey
Welcome Sonya Liana moved to NI from Canada in June 2004 to join CEAT. Over the past couple of years Liana has committed herself tirelessly to the implementation and supervision of over 25 children. Further to this she has made a significant contribution to the on-going development of CEAT. In September 2005 Liana’s husband Rob returned to Canada to start his training with the Royal Canadian Mounted Police (the Mounties). In March this year Rob will graduate and it will be time for Liana to start her plans to relocate back to Canada. Over the next few weeks Liana will be changing roles as she transitions from her individual programmes and focuses her energies on on-going staff development and the improvement of community awareness of Applied Behaviour Analysis. We anticipate that Liana will be returning to Canada at the end of May, so get ready for a rather large and emotional leaving party just after Easter!!!!
CEAT would like to introduce you to Sonya Irwin, who will be joining CEAT in May 2006 in the role of a Clinical Supervisor. Sonya is from Northern Ireland but she has been living in London, where she trained and worked at the London Early Autism Project (LEAP) alongside Kimmy and Mary. Additionally Sonya has received training by leading Verbal Behaviour Consultants in the areas of Natural Environment Teaching and the use of the ABLLS assessment tool. Sonya is currently studying for her BCABA for which she has nearly completed the coursework. When she joins CEAT, Sonya will be responsible for conducting a curriculum assessment of all children starting their home-based programmes.
She will also conduct follow-up
assessments every 6-8 months. This assessment process will also be available to all of the children currently participating in programmes. In addition to this role Sonya will be supervising home-programmes,
conducting
training
seminars
developing a community awareness of early intervention.
WELCOME LORRAINE! We are pleased to announce that Lorraine Hoey will soon join our clinical team as a Programme Supervisor. Lorraine has a degree in Applied Psychology from the University of Ulster and she is currently studying part-time at Queens for her Masters in Special Education. After completing her six month internship with CEAT, Lorraine will now provide direct supervision to programmes and teams. Lorraine has worked diligently through the internship, which involves six months of coursework, four team placements, six case studies, eight assignments, and a weekend stay with a family and their child with autism. This, combined with her three years experience working as a Lead Therapist on treatment teams, has prepared Lorraine to be a welcomed and valued representative of the CEAT! Welcome, Lorraine!
and
Artist of the Month: Paul, Aged 8
Therapist Orientation Seminar Saturday, 25 February 2006 Topics to Include:
The Science of Applied Behaviour Analysis The Discrete Trial Teaching Approach Prompting and Prompt Fading Reinforcer and Reinforcer Assessment The Acquisition Process Data Collection
Venue: The Seagoe Hotel, Portadown Time: 9:30 a.m. to 4:30 p.m. Registration and payment mus t be submitted by 15 February. Parents and therapists working on recently or soon to be established home programmes are encouraged to attend.
McCartan Tribunal Success A Tribunal recently ordered that the SEELB provide funding for one academic year (38 weeks) for the continuation of a home-based ABA programme for Sean MCartan, the son of Mark and Joan McCartan. This decision follows that of the High Court decision last year which ruled that the SEELB had acted unlawfully in its decision not to fund home-based ABA therapy for five-year-old Sean. “Sean’s Story” featured in our March 2005 Newsletter and he is also featured on our website. Since the March 2005 article was published Sean has continued to make impressive gains. His understanding and use of language has improved significantly,and he has started to understand the perspective of another individual. Sean attends the P1 class of his local mainstream school with the support of a fulltime Classroom Assistant who is also a member of his home-based therapy team. Sean’s parents have followed the research model of intervention and they are seeing the results of what can be achieved when early intervention is conducted correctly. Mark and Joan can be seen here in this Christmas family photograph along with their three sons Daniel (7), Sean (5) and Ross (2). Steel Drums, Main Stage, Leicester Square, London
6
Egg-cellent Easter Card Contest!
CEAT welcomes Easter Card entries from all children. Art will be selected from each group below and will be featured in the next newsletter. 2 – 5 year olds 5 – 10 year olds Please Post Entries or Give them To Your Supervisor
Over 150 delegates attended the two day “Facing Autism ABA, Ireland 2005” conference, hosted by the University of Ulster - Coleraine in December. This major conference successfully brought together key speakers such as Bobby Newman, Gina Green and Jane Howard. The conference also facilitated small workshops for the delegates to attend on the second day. The seminar conducted by Jane Howard and Coleen Sparkman presented a variety of the programmes that they use with children who participate in home-programmes and centre-based education through their Clinic. All CEAT Clinicians attended the conference and the workshops in order to contribute to their on-going professional training.
TEACCH Training Course In January, Kimmy, Mary and Liana had the opportunity to attend an accredited TEACCH training, lead by Dr Gary Mesibov, Director of Division TEACCH. The Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) approach is described as a “structured teaching” approach that assists individuals with autism in organizing themselves and responding more appropriately to their environments. Aspects of TEACCH’s “structured teaching” are prevalent in the educational programmes provided for children with autistic spectrum disorders (ASD) in Northern Ireland. The phrase “we use TEACCH” must be as well heard as the phrase “we do ABA” and these two approaches are often considered to be mutually exclusive. Thus, we took the opportunity at this training to learn about “structured teaching” in more detail, to observe video footage of individuals with all ages using “structured teaching” and talking personally with Dr Mesibov about his views on Applied Behaviour Analysis and his own approach. We were pleased to find that despite the fundamental philosophic differences between the views of autism adopted by each approach, we also found a number of commonalities between the two. The presentation highlighted the invaluable contribution of visual strategies to the communication with and education of individuals with ASD. As we well know, the use of visual schedules, environmental cues, reinforcement scheduling, prompts and teaching materials are by no means exclusive to one approach; in fact they are used in our behaviour analytic programmes whenever appropriate to an individual’s learning style. This key aspect of TEACCH is relevant , but by no means limited to that particular approach. On the other hand, the “structured teaching” approach adopts a “culture of autism” by changing the environment to accommodate what is perceived as the needs of an “autistic” perspective. Consequently, individuals are presented with isolated, individual shoe-box tasks in a restrictive and repetitive setting. However we believe in a child looking up into the face of a person when learning and practicing skills; we also believe that high levels of social interaction presented in a colourful environment are a fundamental premise from which children grow and learn to join in our world by communicating with us, laughing with us and using shoe boxes to make art projects with.
centre for early autism treatment Quarterly Newsletter ~ March 2006
Dear Families, It has only been a couple of months since our last newsletter but it has been a very busy and important two months for all our children and their families. In March we were visited by Dr Glen Sallows and Tamlynn Graupner from the Wisconsin Early Autism Project. The five days that they were here went by extremely quickly and it we felt like we needed a month to recover from the schedule that we set for them. We were proud to share your hard work and successes with these two world-renowned clinicians and hope that you found their insight valuable. We were also pleased to welcome Sonya Irwin back to Northern Ireland, who made a special visit to conduct several ABLLS assessments with our children. In May, Sonya will be joining Sarah Lavery in taking on the role of CEAT’s Clinic Supervisors. They are both looking forward to their roles in the provision of home-based programmes, training seminars, and the development of CEAT’s clinical services. Finally, we would like to take this opportunity to welcome to CEAT the five new families that have started home-based programmes this year. We wish you and all of our families the very best as you move ahead this spring season. Kimmy and Mary
Congratulations to Sarah on her
recent promotion! Sarah Lavery, CEAT’s first Programme Supervisor, has been providing high quality supervision to many children’s programmes over the past two years. Sarah has recently been promoted to Clinic Supervisor! Sarah’s new role will
Centre for Early Autism Treatment
is proud to present
Manding Training Seminar “The Art of Teaching to Request” 13 May 2006
allow her the opportunity to share her skills and expertise with other CEAT Programme Supervisors and to aid in the development of CEAT as an organization. Good work, Sarah!
Topics will Include: What is Manding ?
Why teach a child to Mand ?
How do we facilitate Manding ?
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
Data Collection for Manding
Venue to Be Announced
Thank you to Dr Sallows and Tammy Graupner CEAT was delighted to re-establish our links with Dr Glen Sallows and Tammy Graupner when they visited us here in Belfast in March. During their trip Glen and Tammy were able to meet with over 20 children from CEAT. Dr Sallows was very impressed by the high quality of therapy that was conducted by all of the tutors and he was delighted to see so many children actively learning through well-designed and frequently supervised home-based programmes. On Monday 13th March, Glen and Tammy presented their recent research to a packed lecture hall at Queen’s University. Considering that it was a very wet and windy evening, the turn out of over 150 people was excellent. We would like to thank the Greater Belfast Branch of the National Autistic Society for co-hosting this presentation, from which we have received a tremendous amount of positive feedback. Dr Sallows’ research has once again brought to the attention of many professionals working with children with autism, that early intervention can produce significant life changing gains for many children. These gains enable them to understand the world, communicate with their family, play with their siblings and friends, meaningfully participate in educational opportunities and develop life skills that provide children with dignity and respect. CEAT wishes to thank Glen and Tammy for visiting with us and we look forward to welcoming them back to Northern Ireland in the near future.
ABLLS Testing The Assessment of Basic Language and Learning Skills (ABLLS) is a comprehensive assessment and skills tracking system for children with language delays. The ABLLS provides both parents and their Supervisors with specific information regarding their child’s current skills and assists in the selection of short-term objectives. Assessment results are presented in a written report and a skills tracking system that presents your child’s current skill base in units on grids that represent 26 different critical skill areas. These areas include but are not limited to: visual performance, receptive language, labeling, mixed concepts, syntax and grammar, play and social skills, academics, independent living and gross/fine motor skills. The ABLLS is not designed to provide age norms or IQ scores, instead it is designed to serve as a skills assessment to be used to ensure that each child is learning all the prerequisites skills required for the targeting of new skills and concepts. After one year the assessment can be updated to clearly represent your child’s progress across all areas of the curriculum. The assessment takes approximately five hours to administer, a three hour session followed by a two hour session. During this time the assessor will discuss certain skill areas with the parents. The assessment involves observation of the child within their natural environment, play and table top work. We suggest that all parents discuss with their Programme Supervisor whether it is clinically appropriate for their child to be assessed. We do recommend that all children receiving therapy on a daily basis (during the week) undergo ABLLS. However this is not a requirement of provision of services. Please contact the CEAT office to find out more details and to book in your child’s assessment.
From Marti Leimbach, author of the novel Daniel Isn’t Talking I have written novels all my adult life, but if someone had told me early in my career that one day I would write a novel like Daniel Isn’t Talking – a novel about autism -- I never would have believed them. This is because I understood autism as a rare condition – so what were the chances of ever even thinking about it, let alone writing a full-length novel about it? Second, I had been told that autism, when it occurred, was an untreatable impairment – how would it be possible to render into readable fiction anything so darkly permanent, so intractable, as autism? I was no more enlightened about autism in December 1999 when my son, Nicholas, was diagnosed following his third birthday. I had discovered he was autistic by probing the internet and asking the “autism” mums and dads about whether they thought my non-verbal three year old who had poor eye contact, no play skills, and who walked on his toes could possibly be on the spectrum. I still have many of the thoughtful emails that came back to me from mothers and fathers all over the world who did their best, in the most gentle of manners, to let me know the truth. All of them urged me to get a diagnosis, which I did. The verdict was autism; probably “moderate”, definitely not “severe”, with a 60% chance he would never have any useful language. Fortunately for Nicholas, I was steered early on into Applied Behaviour Analysis. We started our ABA using a textbook co-written by Gina Green and Catherine Maurice, meanwhile searching frantically for a provider in our area. When finally we found the right people, we had to start again because our therapist -trainees dropped out. So we started again and we got lucky. A handful of new trainees who seemed enthusiastic to learn this “new” therapy, and an amazingly gifted supervisor to direct us all. In the space of a few months we discovered that Nicholas was not only clever, but also that he was eager to learn. He had a terrible problem making sounds and difficulty with any gross motor activity, but there was something different about him: he was developing. We started doing more “natural environment training”; suddenly ABA took place anywhere and everywhere – at playgrounds and libraries, supermarkets and zoos. We worked hard on play. We emphasized the meaningful interaction between therapists and Nick; we worked on enhancing joint attention, on making each skill or task or activity intrinsically rewarding, meanwhile piling on the reinforcers. Slowly, our little boy transformed. We saw autism lose its hold on him; and we saw our son blossom in front of us. Even so, it never occurred to me to write a novel about this experience. That came later, when Nicholas was so much like a normal child that I was no longer an “ABA mum” but just a mum. No longer struggling against autism on behalf of my son, but reflecting on the experience our family shared. Daniel Isn’t Talking is the novel that describes, for many of us, that moment of diagnosis – just before the moment – when your whole world starts to tip. It is a frank account of life with an autistic child before intervention, and demonstrates the ability of our children with autism to transform given the right therapy. Oh sure, there’s some invention in the novel – it is fiction, after all – but the therapy is real. The improvement in the child is absolutely what I saw in my own son. You might wonder why I wrote it as a novel instead of a memoir. This is because I wanted to dramatize the experience, to fully include the reader in every struggle the characters experience, in every doubt and worry and hope and triumph. Until the general public can “experience” the feeling when a non-verbal child begins to communicate, when a formerly “aloof” child starts to reference his parents and siblings, they cannot be expected to understand what we as parents of autistic children understand. To put it bluntly, they cannot be expected to fully support our efforts if they do not believe those efforts work. I say this because I doubt I would ever have been able to imagine the potential of our children with ASD if I hadn’t seen it firsthand. This is my fifth novel, but by far the most important one to me. Let’s hope that it does something to bring to light the need to help our children with autism, and to demonstrate how much ability our children have. CEAT would like to thank Marti for writing this article especially for our families. Please join us when we welcome her to Belfast in May 2006.
SPECIAL OFFER
Order Daniel Isn’t Talking by Marti Leimbach at the special price of £9.99 inc. P&P UK (r.r.p. £10.99) by calling 0870 787 1724 and quoting ref: 846A. Postage and packing is free on all UK orders. Please allow 21 days for delivery. Offer expires 31st August 2006. Congratulations Rob!
On 1 May 2006, CEAT is entering two teams into the Belfast Marathon. Each team has five participants. Team 1: Kimmy, Liana, Grainne, Adrian and Loretta; Team 2: Mary, Lorraine, Kirsty, Mark and Sarah. CEAT aims to raise money for the Impact Trust, a cross community charity that provides funding for the provision of early, intervention based on the principles of ABA. Additionally The Impact Trust is being supported by “Rocwell” and many of the gaelic football teams in County Tyrone. CEAT will be approaching both small and large companies to sponsor us in our efforts. We would appreciate any suggestions as to specific companies that we should approach or that families are willing to approach on our behalf. For more details on the Impact Trust please contact CEAT at 028 9066 2651.
As many of you are aware, my husband left Northern Ireland this past September after being accepted into the Royal Canadian Mounted Police. I was able to return to Canada early in March to celebrate his graduation from the cadet training programme. Rob achieved top standing in his troop and was voted Valedictorian by his fellow cadets. Rob is now a full fledged “Mountie” and is now known as Constable Maione. He has worked towards this for the past 10 years and I am proud of his dedication to achieving his dream. I will be joining him in Canada in June as he begins his career as a Mountie. Liana