27th March - 2nd April 2017
Autism Awareness Week
Meet Liz Holmes and Dean Smith (Managers at UKYAP) and hear how we can help families living with autism, through using the techniques of Applied Behaviour Analysis (ABA).
Are you and your family sleeping well?
Sleep. We all need it. Most of us crave it. If you are reading this then it’s quite possible you are deprived of it.
The importance of a ‘good night’s sleep’ has long been demonstrated. Sleep is vital for growth, emotional stability and cognitive development. When you think about the number of developmental stages a child goes through in early life, sleep almost seems more vital. It may be necessary to teach your child to sleep soundly through the night. For some parents, this can feel like climbing a mountain.
If your child has a diagnosis of autism, this mountain can feel even steeper. Here at UKYAP, Consultants understand the importance of sleep. One of the first questions on their minds as they arrive for your workshop will be “how did s/he sleep last night?” Your child’s sleep patterns are as important to the success of the ABA programme as the skills you teach in sessions, and they can be addressed through the principles of ABA.
The first step, as always, is the analysis of your child’s sleep behaviour. This will involve taking data and answering questions about what your child does throughout the night. Your consultant will then use scientific, researched ABA techniques to help your child learn how to sleep better. This might be the bedtime routine, how to fall asleep on their own, how to resettle themselves in the night when they wake up, how to wake up at a reasonable time, what to do when it’s time to get up, or ensuring that your child’s activity level is appropriate throughout the day so that they are tired at bedtime.
Consultants at UKYAP work closely with parents and provide on-going analysis and support to ensure that sleep interventions are effective and right for your child. So if your child is experiencing any difficulties with sleep, talk to us today. Let us support you on the path towards a better night’s sleep, for you and your child.
Christmas working hours
We will close for the festive period at 5pm on Friday 23rd December and will reopen at 9am on Tuesday 3rd January.
Recent media coverage of an intervention known as 'PACT'...
Recently, there were several mainstream media reports (including the BBC) that appeared to say that the first early-intervention study had been completed with children with autism. There was some confusion amongst the staff here at UKYAP because we know that we have already completed our own one-year early intervention study (Hayward, Eikeseth, Gale & Morgan, 2009), and that many more have been done that show the effectiveness of early intensive behavioural intervention (EIBI) programmes.
The confusion came because the media reported that the study in question (Pickles et al. (2016), published in The Lancet) had shown that children with autism had made exciting gains in their skills following early intervention using a parent-mediated social communication programme, known as PACT. In actual fact, the study was a long-term follow-up of children who had initially received PACT between the ages of 2 and 4 years, and following a gap of over 5 years since their treatment. The children who had received PACT in their early years were, at that time, compared to other children who received treatment-as-usual.
These two groups of children were then compared again at an average age of 10 years old. It was found that the children who had received PACT when younger now had fewer autism symptoms than the children who didn’t receive it. They were somewhat better at initiating social contact with others (the difference between the two groups was smaller), and there was no difference between the two groups in receptive/expressive language skills. The study is one of only a few studies that are looking at the long-term effects of early intervention programmes.
We are excited to say that some of us here at UKYAP are looking at the long-term effectiveness of our own EIBI programmes, and we’ll be publishing those results soon!
We will close for a two-week Summer holiday from 1st August 2016 to 12th August 2016. We re-open on Monday 15th August. 2016
Proposed changes to SEN Legislation
The Government has recently put together some proposed changes to the legislation relating to children with Special Educational Needs (SEN).
These changes will affect the ways in which children with SEN are assessed, the ways in which they are given provision to meet their needs, the effort that the Local Authority (LA) has to make to provide services for children, and the rights of parents to appeal the LA's provision, as well as forcing parents into a non-independent mediation process should any disagreements arise between the parents and the LA.
These changes are described fully in the draft legislation document produced by the Government and this is available here: http://www.official-documents.gov.uk/document/cm84/8438/8438.pdf.
Proposed changes remove many rights from parents
We have been contacted recently by a lawyer called Melinda Nettleton of the firm SEN Legal with regard to these proposed changes. Melinda is a lawyer who specialises in helping children with SEN and their parents, and we have worked with Melinda for many years as she fights LAs for funding for ABA programmes. Melinda shares our concern that these proposed changes remove many rights from parents of children with SEN and from the children themselves and she feels, as we do, that all interested parties need to flood the Government with letters that express our concern over these changes, and that we sign up to an online petition to prevent these changes going through.
Melinda has written two letters, one is a letter to you, as a parent of a child with SEN, explaining the concerns with the proposed changes, and summarises some of the main problems with these changes. The second letter is a draft of a letter for you and your family/friends to send to your MP. Melinda has also set up an online petition that you, your family, and your friends can all sign at the following link: http://www.ipetitions.com/petition/re-draft-legislation-children-sen/.
Help us lobby MPs and the national government to stop these changes
We ask you to read the two letters, sign the online petition, and help us lobby MPs and the national Government with our concerns about the proposed changes. Please add your MP's details to the letter for MPs (you can find your MP's name and address here: http://findyourmp.parliament.uk) and send the letter off as soon as you can.
We would ask you to distribute all of this information to all of your family members and friends, ask them to write to their MP and sign the online petition too, and then ask them to forward this information to all of their family and friends too. We need to make it very clear to the Government that they should not progress with these changes.
UK Young Autism Project Research
Between 1998 and 2007 UK Young Autism Project collected data that looked at the effectiveness of ABA programmes for young children with autism after one year of the programme, and this study was published in 2009. Details of this study can be found on our Research page.
We are very keen to see how the participants in that study are doing now, and we have recently been in touch with these families to send them a questionnaire about their child's progress, and to invite them to take part in more formal assessments. If you were one of the families that took part in the study that was published in 2009 and you haven't heard from us then please get in touch. This is a great opportunity for us to learn more about the long-term effectiveness of ABA. If your child participated in the 2009 study and you would like to speak to us about taking part in the follow-up study then please contact Dean Smith on 020 3369 9630.
We are a Community Interest Company
During the last year we have been preparing to become a 'Community Interest Company' (CIC), which is a relatively new type of company. Community Interest Companies are limited companies, with special additional features, created for the use of people who want to conduct a business or other activity for community benefit, and not purely for private advantage. This is achieved by a 'community interest test' and 'asset lock' which ensure that the CIC is established for community purposes and the assets and profits are dedicated to these purposes.
Registration of a company as a CIC has to be approved by the Regulator who also has a continuing monitoring and enforcement role. We are very pleased to announce that our application was successful and we are now a CIC.
The work we carry out at UKYAP is better suited to being a CIC and it has been functioning in this way throughout the life of the company. In addition we now have a staff that is qualified and experienced to be able to apply behaviour analysis in a wider sense. The name of the CIC is UK Behaviour Analysis and Research Group C.I.C. UK Young Autism Project is now a division of UK Behaviour Analysis and Research Group. The change to the company does not affect our services, research or training within UKYAP.
UK ABA Education Competencies Framework
UK Young Autism Project has been directly involved in the creation of the UK ABA Education Competencies Framework. This was created to clearly outline competencies required by those working in the field of ABA and autism.
You can download the framework on our Careers page.
Special Educational Needs and Disability Green Paper
The government have launched a Green Paper on special educational needs and disability. It is entited, Support and Aspiration: A New Approach to Special Educational Needs and Disability;
The paper is currently out for consultation and we would advise that all parents take time to look through the paper. This is available to download from the Department for Education website. This also gives details as to how you can submit your response to the paper. The deadline for submitting responses is 30th June 2011.
Press Release - 30th March, 2010
Remarkable results for autism treatment
Treatment for children with autism as young as two years old can dramatically improve their IQ and life skills within just one year, a new scientific study reveals today.
Groundbreaking research by experts at the London and Birmingham based UK Young Autism Project reports significant improvements in intellectual ability, language and social skills for youngsters receiving intensive treatment of 36 hours per week for a full 12 month period.
The study, involved following the progress of 44 children, aged between two and three and a half years old, undertaking an applied behaviour analysis (ABA) programme with a comprehensive teaching curriculum, a controversial programme originally devised by Dr O. Ivar Lovaas at the University of California, Los Angeles (UCLA).
Between the ten girls and 34 boys, after a year of treatment, IQ of the group increased by an average 16 points. In many cases children who were unable to speak and comprehend very little at all developed the language skills exceeding those of a two year old (i.e. a two year increase in language skills within 12 months.) Significant increases were also seen in communication, daily living, socialisation and motor skills as measured by the Vineland Adaptive Behaviour Scales.
Autism is a debilitating condition, characterised by severe impairment in social interaction and communication combined with highly rigid, ritualistic behaviour. Within the UK alone up to four out of every thousand people are sufferers and the diagnosis is increasing.
UK Young Autism Project is part of the UCLA Multi-Site Young Autism Project directed by Dr O. Ivar Lovaas (who originally developed the programme) and Dr. Tristram Smith. The directors of UK Young Autism Project are Dr Svein Eikeseth (Professor), Ms Diane Hayward and Miss Catherine Gale. Today, launching the research, Ms Hayward and Miss Gale described the findings as hugely important in the field of helping all people with autism and their families: 'With the right approach and supervision, there is hope out there', Miss Gale said.
UK Young Autism Project which has been established since 2000, carried out a variety of psychological tests on each child before the treatment year began and afterwards including the Bayley Scales of Infant Development, WPPSI-R, Reynell Developmental Language Scales, Merrill Palmer Scales of Mental Tests, and Vineland Adaptive Behaviour Scales.
Miss Gale explained why the new findings are significant: 'Our study is unique because it proves that dramatic progress can be made in just one year, provided the right components are in place. Crucially this requires high levels of supervision from correctly trained professionals and the correct amount of hours per week. The child needs to be taught in their own home, but also learn from experiencing the environment around them, including when appropriate attending nursery and later mainstream school, albeit with trained support. Every learning programme needs to be individually designed around the child's difficulties but also foster their strengths and talents. The parents have to be trained and involved. It isn't easy, and not suitable for every family. But with all the right ingredients, the long term prognosis is highly positive. No other work on autism in the UK has produced such improvements within only one year'.
Ms Hayward stressed however that this is not a one year cure for autism. 'This is not a miracle cure. What we are demonstrating with this research is how much progress can be made in a short period of time. Most children and people with autism do need some ongoing support, which changes as they get older. But if we can give them this programme and adapt to their needs and progress we can give these children and young adults a much improved chance of a happy, independent life in the long term. This is ultimately more cost effective than losing them in the state system and them needing lifelong care packages'.
The Directors of UKYAP criticised many education authorities who committed to a two year basic ABA programme, without checking that the requisite components identified through research, including high levels of training and monitoring, were in place. Too many authorities have then abandoned the work when the two years are complete.
Ms Hayward said: 'There are cases where two years of treatment in the pre-school years is enough and the child can then function and learn independently, but they are rare. It is far more common for this to be a longer term commitment, with the child becoming increasingly independent and typically happier. The level of intensity and number of hours and learning support decreases accordingly. So yes ABA is an expensive option and needs to go on for more years than often practised. But the end result is extremely cost effective, because many achieve independent living while others can stay with their families instead of being institutionalised'.
She added: 'To take a child whose parents have been told they will never be toilet trained, speak or cope in the world and enable them to achieve these skills is a privilege. Every person with autism and their families deserves access to this treatment. But it must be done properly and it would be worthwhile for funders to commit to that'.
UK Young Autism Project's long term follow up data will be reported together with data from sister sites across the world, who collaboratively found substantial and significant gains for children after three or four years of treatment, with all of the sites running quality controlled programmes with carefully monitored treatment variables and benefitting from a wide group of experts in the field.