Author Archives: Elaine Collins

Improving early intervention for children with autism

Zarbanoo Rajput

Zarbanoo Rajput BA (Hons), mum to a 15 year old with autism and an active member of ABAAccess4all parental campaign discusses recent research on the use of early behavioural intervention for children with autism across Europe, and reflects on her own experience in the UK.

“Autism Spectrum Disorder is a developmental condition affecting language, communication, behaviour, and socialization. At one end of the spectrum, there are individuals who can live an independent life, at the other end, there are children who start their school life with little or no language, display challenging behaviours, cannot use the toilet and have severe learning disabilities. Inclusion in mainstream education is uncommon for children at the more severe end of the spectrum, they are likely to be educated in a special school or unit.

Our beginning

I am a mum of 15-year-old teenager with autism who received an official diagnosis when he was aged four and half. Whilst it was difficult to come to terms with this diagnosis, we quickly pulled ourselves together and asked ‘what can we do to help our son?’, ‘What is the best thing to do?’ This is where the madness began. Every professional we spoke to had a different opinion. We had no idea who was speaking the truth. It was extremely difficult to access accurate information from a reliable source, let alone be supported with the intervention approach, Applied Behaviour Analysis (ABA), we ended up choosing.

For more information about Autism and Applied Behvaioural Analysis (ABA) please see Professor Richard Hastings blog ‘What is ABA for children with autism for?’

Early intervention across Europe

I was thinking back to our family’s experience when reading a recent research study: Use of early intervention for young children with autism spectrum disorder across Europe.(1 ). The study was written by a total of 40 researchers from 32 Universities across Europe. The purpose of this research study was to get a picture of the use and the weekly number of hours of early intervention/therapy provided for young children with autism spectrum disorder (ASD) in a number of European countries.

Parents from 18 European countries took part and completed an online survey, which asked about current use of intervention (type and number or hours per week) received at home, school and in a clinic setting such as a child disability clinic. In total, 1680 parents who had seven-year-old children or younger with autism spectrum disorder took part. Only parents of children up to the age of seven were in the study as by this age the majority of European children have started school.

The type of interventions the study was interested in included: behavioural intervention, developmental and/or relationship based intervention, speech and language therapy, occupational therapy, other educational and psychological interventions, and parent training. When parents were asked about their use of a specific intervention type, it was noted that similar/identical therapy programmes were available with different names. Therefore, intervention examples were given specific to each country, such as Applied Behaviour Analysis (ABA) and Pivotal Response Training (PRT), when asked within a broader category question such as ‘is your child receiving behavioural intervention?’

The study found that there is variability in the use and intensity of early intervention between European countries. Seventy four percent of parents from the UK reported that their child received an intervention. Indicating that 25% of children in the UK were having no early intervention at all. The average intensity of early intervention in the UK per week was 6.97 hours. Poland was found to have the best early intervention rates in this study, with 98.7% of children having some form of intervention before they are 7 years old.

Eighteen percent of parents of children with autism from the UK were reported to be receiving a behavioural intervention (7.54 hours on average per week), 8.1% a developmental or relationship based intervention (4.57 hours), 62.2% speech and language therapy (1.11 hours), 26.1% occupational therapy (1.24 hours), 23.4% other educational and psychological intervention (7.93 hours) and 23.4% were receiving parent training (1.61 hours).

The study concluded that while there is evidence that each and every child with autism needs to access individualised, multidimensional and multi-disciplinary intervention, almost 10% of parents who took part in this study throughout Europe, reported no early intervention at all for their child. The UK was one of the worst performing countries, with 25% of children studied receiving no early intervention. The authors reiterate the importance of training professionals in identifying and treating ASD as early as possible so families are not left unsupported in day-to-day life.

Our experience of early intervention

The study outlined above suggests that children receiving behavioural intervention in the UK are receiving an average of 7.5 hours of therapy per week. While this is a good start only 18% of UK parents access this level of behavioural intervention. This number is low and reflects our own experience as well. Currently, post diagnosis, parents are referred to Early Bird and Early Bird Plus programmes, which are run by the leading autism charity, the National Autistic Society (NAS). Referrals are also made to other services such as Speech and Language Therapy, Occupational Therapy, Educational Psychology, and specialist Communication/Autism Teams. We received a diagnosis back in 2005-2006. Note, no referral was made to a behavioural specialist. It seems ABA or other evidence based behavioural interventions are not routinely offered by the NHS for young children in the UK. Reading this, one might think how lucky we are to have so many services available to our families. Unfortunately once you go through them all, you discover that, it is all flash and no substance.

Once we managed to take the diagnosis in, we started reviewing literature about autism interventions. The child psychiatrist we saw at diagnosis said that the more the child’s language develops, the better the prognosis. We were very concerned about Elias’ future. Aged four and half at diagnosis, Elias though had some language, was very far behind his peers. He couldn’t label colours, numbers, he had no understanding of phonics, and had major problems with haircutting and bath time, to name a few. Our family needed help, Elias needed help, help I was hoping to find going through the Early Bird Plus programme. Unfortunately we didn’t see the progress we were hoping for, so we began looking elsewhere.

We were fortunate to have heard about someone who had a special educational needs tribunal bundle to share with parents. The wealth of information available in this bundle opened up our eyes. There were studies showing positive results for children with autism receiving an ABA programme, including one, which was focused on the four to seven age range, which applied to us. Other studies were for younger children. Overnight, we became familiar with names of researchers and research studies we would never have known were out there. However, the minute we started mentioning to professionals the term “ABA” and our interest in using this approach with our son, all doors started to close in our face. We were steered towards a programme called Treatment and Education of Autistic and related Communication handicapped Children, also known as project TEACCH. ‘What did we do wrong?’ From our perspective, we made an educated decision about the best intervention option for our child, for which we were punished. We strongly feel more evidence based early intervention in general is needed in the UK, with currently too many children and families missing out.

Parents working together using research evidence

In the UK, many parents of children with autism I have met are very unhappy about the situation with autism diagnosis and early intervention, hence the need for ABAAccess4ALL campaign. ABA Access4All aims to improve UK understanding of and access to professionally managed ABA therapies for children with autism and other disabilities.

Many parents I have spoken to feel they have been misled about ABA and are angry about their child/children’s precious time being lost. Professional recommendations about early intervention for children with autism in general suggests that maximum gain can be made between the ages of two to four. However, diagnoses are often provided late or when early diagnosis is made, accurate information about effective interventions is not given to parents.

I believe that parent-led campaigns for UK services to make available evidence-based approaches for children with autism are an excellent way to use research evidence to give children the best start in life. ABAAcess4all is an example of one such campaign with an evidence-based focus. We will continue to strive for better services in the hope that all children and families receive what they need without parents being driven to bankruptcy, physical and mental exhaustion, and experiencing significant strain on their family relationships”.
©Zarbanoo Rajput 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

References

1. Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., … & Fuentes, J. (2015). Use of early intervention for young children with autism spectrum disorder across Europe. Autism, Vol 20 (2) 233-249

Support for our Problem-Solving Toolkit Workshops

problem solving toolkitWe are very grateful to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation who have each awarded us a £5,000 grant to fund our Problem Solving Toolkit Workshops.

Their generous support means that we can help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.

Our Problem Solving Toolkit and Workshops are designed to help families access the services that their children need, and are entitled to. The Toolkit is a comprehensive, practical and easy to use guide, packed with useful advice, solutions and precedent letters. You can download the Toolkit here.

Problem Solving Toolkit Workshops

This year we have launched our Problem Solving Toolkit Workshops which use the information and resources in the Toolkit to give parents, carers and professionals the skills and knowledge they need to advocate for themselves. Each workshop lasts for 3-4 hours and includes a presentation, case studies for group work and a chance to discuss and share experiences. The workshops are free.

We’ve had some great feedback from parents and professionals who attended our initial workshop:

  • “A wonderful guide to help parents, thank you so much. It is a real maze and you have provided a crutch for parents to use”. (A parent)
  • “I will be recommending this resource to the families that I work with. It is wonderful”.  (A professional)

Thanks again to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation for their generous support.

Why should I take part in research about families of children with learning disabilities?

University of Warwick logoThe CEDAR research centre at Warwick University needs 1000 children with learning disabilities and their families to help with a research project.

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour, considers how research can help families like hers:

If someone had asked me to help with a research project when my son James was little, I would probably have asked them to go away. I was usually very tired and grumpy, because James didn’t sleep through the night. He is autistic and has learning disabilities. He often woke in the early hours and because he needs one-to-one supervision, I had to be awake too. My joints ached from moving and handling him, as he is a wheelchair user and doubly incontinent. All of his care needs were carried out by me or his Dad and despite the hoists in our house, this physical care was time consuming and heavy work.

James is now 17 and goes to a specialist boarding school, so I get a reasonable night’s sleep. If someone asked me to help with a research project today, I would be much more co-operative. But rest is not the only thing which has changed my approach. I have come to appreciate just how powerful evidence can be in influencing government policy and how it can result in more investment for disabled children.

When James was 5, family life was very difficult. He was frightened of leaving the security of the house and had a phobia about getting in the car. As a result, his brother and sister ended up trapped at home a lot of the time. I was deeply worried about them. What we really needed was someone to look after James to give us a break, so we could go out to the cinema, or for a pizza. Eventually we were referred to the social care department of our local authority, as a priority for support. Despite this, the council refused to fund any respite care and so began a long battle.

Six years later, for the first time local authorities were placed under a specific legal duty to provide short breaks for carers of disabled children. I didn’t know then that the law had changed. But looking back, I realise that we had stopped hitting a brick wall in our efforts to get respite and had started pushing at an open door.

The origins of the new law lay in campaigning by disability charities such as Mencap which led to parliamentary hearings, where parents, government ministers and other officials gave evidence. This was later followed by research commissioned by the Every Disabled Child Matters Campaign (EDCM) and the Department for Education (DfE). The research project “Aiming High” took place in two stages, starting in 2009 and ending in 2011. In this way, the families which were involved could be followed over time. The results showed that it was cheaper to provide short breaks to families who needed it, before they became so exhausted that they were incapable of looking after their children at all.

Now, headed by Professor Richard Hastings, The Cerebra Family Research Group based at CEDAR, a research centre at The University of Warwick and the research charity Cerebra, needs 1000 families of children with a learning disability to volunteer for another study over time. They want to look at the wellbeing of families who have children with a learning disability; not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and will help to shape future support for families and children.

If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.

To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: familyresearch@warwick.ac.uk or call 02476 524 139.

©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

Why timely diagnosis of autism is important

Tracy Elliott, our Head of Research and Information explains why timely diagnosis of autism is important and tells us her family’s story:

Tracy and her family

Tracy and her family

“My daughter has a diagnosis of autism. The journey to diagnosis was traumatic and bewildering for my family. Aged 15 her self harming behaviour, driven by depression and anxiety, had become so severe she was a danger to herself and was admitted to a child and adolescence psychiatric unit five hours drive from our family home. She remained there for over 3 months.

Previously, unknown to us and for reasons not understood by herself, she had taught herself to copy and mimic the behaviour of her peers. From age 6 she knew she was different, she did not know why. She just felt something was very wrong and she had to hide ‘her weirdness’. Living in fear of ‘being found out’. At first this wasn’t so hard but as adolescence arrived it became impossible. She became suicidal.

The psychiatrist who saw her when she got to CAMHS had professional expertise and personal experience of autism (this isn’t always the case) and picked up on the autism, something no one else suspected as she did not fit any of the stereotypes. Her diagnosis followed within 6 months. The diagnosis explained to my daughter why she had the experiences she had, that she wasn’t ‘weird’, but had a neurological condition that meant her brain worked differently to that of most of her peers.

Exploring the diagnosis demonstrated that difference brought strengths as well as difficulties. Of course difficulties remain but they are understood, can be rationalised and coping strategies put in place. Things are no longer ‘impossible’ but ‘difficult at times’.  For my daughter her diagnosis came late. Mental health problems already entrenched and more difficult to address.

I was in a meeting recently that included senior medical professionals where a comment was made that early autism diagnosis was less of a priority to the NHS because without an effective intervention to offer there was less urgency required. While understanding the logic I was disappointed and saddened. It made me realise that people like myself and my daughter, who speaks publicly about her experiences, have to speak out. Key decision makers need to understand that even without an intervention an earlier diagnosis would have helped my daughter understand that she is not ‘weird’ but has a valuable contribution to make to her family, her friendships and society. That she is valuable not weird.

Earlier diagnosis could have limited the mental health problems that have plagued her adolescence and early adulthood. Earlier diagnosis would have made a difference to her and our family. Early diagnosis would have saved money on acute mental health services. As for intervention, well firstly it’s not all about interventions, understanding and support can go a long way. Secondly there are interventions that help, some currently being researched by Autistica, however accessing them is difficult (but that is a whole other discussion). My daughter did, eventually, receive valuable and effective intervention and it has helped. You can read my daughter’s story here.

Unacceptable delays for autism diagnosis exist across the UK. That’s for children who are already suspected of having an autistic spectrum disorder. For those children that don’t conform to stereotype, girls in particular, it’s even longer with some never getting a diagnosis. In my family’s experience diagnosis does matter, it does make a positive difference and that’s why I think timely diagnosis of autism is important”.

We want your stories about your family and getting an autism diagnosis. Do you think early diagnosis is important? What are your experiences?

Please send your stories to researchinfo@cerebra.org.uk.

Research and Information Request Service

In a survey we carried out in 2016 (with 1937 respondents), less than 41% of parents receive written information when they get a diagnosis for their child. In addition many families felt that the lack of reliable, accessible and impartial information hampered their ability to make informed choices for their family.

So as a parent or carer of a child with a brain condition you may be keen to look for more information about your child’s condition, therapies, treatments or other services on the internet. While the internet provides a huge amount of information, much of which is freely available and easy to access, not all websites give reliable information.

Our aim is to equip you with the knowledge, skills and confidence you need to do your own research, appraise the information you find and make your own decisions about what’s right for your family.

Parent Guide

As a first step our guide on Finding and appraising information and evidence on the internet makes some suggestions to help you search efficiently on the internet, and to appraise whether the websites you find present reliable and unbiased information.

Parent Research Requests

If you need further help, we will be happy to help. One of our Research Officers can help you frame your question in a way that will provide the evidence you are looking for. We can give advice on search strategies and key websites to explore as well as signposting you to sources of reliable, impartial information. Please get in touch with georgiam@cerebra.org.uk for more information on this service.

Your requests help others

Whatever information you are looking for, the chances are that it will also be useful to other families.  We use a systematic process for dealing with your research requests that allows us to identify and prioritise the issues that are concerning you. Where reliable evidence based information already exists we produce brief fact sheets signposting to it. Where such information is lacking, or does not meet your needs, we commission and produce evidence based guides for parents.

We have a range of Guides for Parents and factsheets that we have developed because of your questions. All of our guides are covered by The Information Standard, a recognised quality mark, which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written. Our guides have received excellent feedback with some recently being highly commended by the British Medical Association.

If you would like more information about our new Research and Information Request Service, please get in touch with georgiam@cerebra.org.uk

Please note that this service is no substitute for medical opinion or advice. We aim to provide information that will give you the information you need to help you make informed decisions about the care of your child in consultation with the medical professionals supporting your child.

Centric supports Cerebra

We are delighted that South Wales recruitment agency Centric have chosen us as their charity of the year for 2017!

Communications Executive for Centric, Grace Busby told us how delighted they are to be partners with us:

A brain condition has a life-long impact not just on the child, but their whole family and Cerebra do an amazing job of helping to support those families and create the best opportunities for them. Everyone at Centric Recruitment is passionate and committed to fundraising and we are thrilled to get behind such a fantastic cause as Cerebra. We look forward to working together in 2017!

Centric will be supporting us with lots of fundraising events throughout the year and their staff were delighted to recently meet with one of the families we help –  Ryan, Dylan and Taran Hooper, along with their mum Vanessa

If your organisation would like to join us on our journey to help families with a child with a brain condition to discover a better life together, please get in touch with Sadie France on 01267 244216 or sadief@cerebra.org.uk.

Welsh SEN ALN Reforms

The Welsh Government has been working on reforming the special educational needs system in Wales since the summer of 2007 and is now in the process of bringing in new legislation.

A Draft Additional Learning Needs and Education Tribunal Bill was published last December followed by a draft Code of Practice on February 14. The Bill itself is currently under consultation until March 3 but the Code of Practice will have its own consultation exercise later in the year.

Changes that are being proposed include:

  • Replacing the term ‘special educational needs’ with ‘additional learning needs’ (ALN) and ‘special educational provision’ with ‘additional learning provision’ (ALP) although the legal definitions behind the terms remains essentially unchanged;
  • Extending the age range from 0 – 25 to include further education colleges and specialist independent colleges (although not higher education or apprenticeships);
  • Replacing the three-tier school action/school action plus/statement system with a one tier system: any learner identified with ALN will receive a new statutory document called an Individual Development Plan (IDP) which also replaces Individual Education Plans (IEP);
  • IDPs will usually be written by schools. Only those learners with the most complex ALN will have an IDP maintained by their local authority meaning that the majority of learners with ALN will have to be assessed by their schools. If either a school or parent believes that a learner has needs requiring local authority intervention they can ask for the local authority’s support in assessing the learner’s ALN;
  • Special Educational Needs Co-ordinators (SENCos) will be known as Additional Learning Needs Co-ordinators (ALeNCOs);
  • As now, local authorities must have disagreement resolution services but will also have to “make arrangements for the provision” of independent advocacy services which will advise and assist with bringing an appeal to the Education Tribunal (which replaces the Special Educational Needs and Disability Tribunal for Wales).

Issues that have been raised so far include the lack of a national template for IDPs meaning that each school and local authority could, in theory, produce different looking IDPs; the capacity of schools and further education colleges to actually produce and maintain IDPs for all of their learners with ALN, and the costs involved. The government in England has spent over £600 million so far on its SEN reform programme which is running into difficulties. Although England has a much bigger population than Wales the financial implications of implementing the new proposals as intended could be significant.

All the relevant documents about the proposed legislation, including the draft Bill, the draft Code of Practice and the issues raised in a recent stakeholders’ event, can be found on the National Assembly for Wales website.

The National Assembly for Wales’ Research Unit has produced a useful overview of the ALN proposals with links to other useful information and details of how to get involved in the consultation on the draft Bill can be found here.

Collection Box Volunteers Needed

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Our collection boxes can be found on the counters of shops, cafes and businesses all over the country. It’s hard to believe but all that spare change really does add up.

On average our collection boxes raise an incredible £55,000 for us!  Lynn Palfreyman and Betty Blyth run a small shop on a campsite in Burton Constable in Yorkshire. They have had one of our collection boxes since 2000 and to date have collected an amazing £27,469 in spare change.

To develop our collection box scheme we are building a team of volunteers across the UK who can build contacts with local businesses in their areas and find new homes to place our boxes.

If you have some time to spare and would like to find out more, please get in touch with our Box Co-Ordinator Melanie Clark on 01267 242587 or melaniec@cerebra.org.uk.

Every penny we raise helps families with children with a brain condition to discover a better life together. It’s an incredibly rewarding journey for everyone involved – why not be a part of it?

Can’t find a riding helmet to fit your child?

We introduce the newest member of our Innovation Centre and would love to hear from you if your child would like to try horsey activities but you can’t find a helmet to fit.

New team member

Maria Kemys

Maria Kemeys

“Hi all, my name is Maria Kemeys. I am the newest member of the CIC team as their new Business Development Officer. I am a recent graduate with a Master’s in Business Administration and have a massive passion for working with a charity who contributes to changes that impact and better a child’s life. I am delighted to have been offered the position to work alongside the team in the Cerebra Innovation Centre where innovative and life changing work is being carried out every day to help children in unique situations. I am looking forward to working as part of the CIC to develop new and existing projects for families and children, helping to them to enjoy life together.

Can’t find a riding helmet to fit your child?

Tommy Lee wearing his helmet

Tommy Lee wearing his helmet

You may remember that in 2016 we were approached by a school on behalf of young man called Tommy Lee. Tommy Lee was unable to participate in their weekly horse riding sessions as the riding centre did not have a helmet that would fit Tommy Lee’s unique head shape.

Our Innovation Team worked hard to design and make a bespoke riding helmet that meant Tommy Lee could take part in riding lessons with his friends. The helmet was not only comfortable but safe and certified by the British Standard Institute (BSI).

Thanks to a donation from Mr and Mrs Coventry at Claire’s Project our team are now able to develop more of these equestrian helmets. So if your child loves horses and would love to try equestrian hobbies but can’t participate because of the standard helmet size,  then please get in touch to find out more.

You can contact the team on cic@cerebra.org.uk or call 01792 483688

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)