Author Archives: Elaine Collins

Cerebra Research Support Network – Help us make a difference

We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?

What is the Research Support Network?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.

We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.

What does it involve?

We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.

What will you actually do?

As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.

Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.

Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.

Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.

Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.

If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at GeorgiaM@cerebra.org.uk

 

Cerebra’s Mission

We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

Accessing Public Services Toolkit Workshop Facilitators Wanted

toolkit cover image
Would you like the opportunity to help families get the knowledge they need to secure appropriate health, social care and education services to help their disabled child achieve the best possible outcomes?

We’re the charity that works with families who include children with brain conditions. We listen to them, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. What we discover together makes everyone’s life better. Join us on our journey, and who knows what we could find?

Our research shows that disabled people and their families experience great difficulties accessing support services from public bodies. Our Accessing Public Services Toolkit aims to unpick these difficulties and suggest effective strategies for resolving them. It’s based on the idea that it’s not in the best interests of public bodies to have these commonly occurring problems and that most of these problems are capable of being resolved without involving lawyers and great expense.

After receiving such positive feedback on the Toolkit in England, and in response to requests from north of the border, we’ve adapted our Toolkit to make it relevant to Scotland. We now want to roll out workshops across Scotland to assist parent/carers in using this new toolkit. It can be daunting, exhausting and sometimes intimidating to challenge public officials so by running these workshops we want to empower parent/carers to not feel fearful about complaining.

If you are a parent/carer of a child with a brain condition and you’d like to be involved in helping to run these workshops in Scotland then please send an up-to-date CV and covering letter to Beverley Hitchcock  by 5pm on Thursday the 12th October 2017. Full training will be provided, along with a daily rate of £150 (£75 for a half day) and travelling expenses.


You can find full details of the role here. 

You can find out more about our legal work here.

My Experience of Applied Behavioural Analysis

Razwana Mushtaq, whose 5 year old daughter has autism, discusses her experience of getting a diagnosis for her daughter, recent research on early intervention and what it is like running an Applied Behavioural Analysis (ABA) programme, with the support of UK Young Autism Project (UKYAP)

 

Background

As parents we want our kids to be happy and independent. We need to support them in order to reach their full potential. As a parent myself, I would do whatever it takes to give my children the best possible. I have four children and do not treat my youngest child, who is five years old now, any different to my other children just because she has autism. I have the same dreams and hopes for her future.

She was delayed in all areas of her development from a very young age and was a very quiet baby. On her first birthday I saw my little girl was enjoying her day, however, over the next twelve months everything changed; her behaviour became different, she started to chew and eat everything in her reach, which could be paper bags, beads, etc. She did not like to be with others as she just would run around and flap her hands, she didn’t make eye contact or respond to her name, she had no language and I didn’t know what to do to get her to sit or play.

She finally got a hearing test at the age of two, which she passed, but the consultant told me to get a referral to a specialist as she was delayed in all areas of her development. I visited my GP to make a referral for further assessments, then things started to move forward at the slowest pace possible and her behaviour was not improving. In the mean time I had a child with difficult behaviours and sleep issues which I didn’t know how to manage. To feel such helplessness without any support, life was as difficult as could be.

We waited for over 9 months for a professional assessment, and in January 2015, a day before her 3rd birthday we finally got a 3 day assessment. It was such a long process, mostly of waiting for appointments with nothing to offer in-between. I felt it was a waste of time that could have been spent on supporting us both in some way. To have the diagnosis of autism confirmed was upsetting indeed, even though I was very much expecting it. But to know your child has disability for life was painful and I felt helpless. I was left not just to deal with her difficulties and behaviours but also without a clue on how to manage all of this. Not one professional mentioned early intervention or anything else to support us. At this point I was losing all hope; I was mentally and physically tired from running after her all day, trying to stop her from eating inedible items and hardly sleeping at night. My other children were all affected and us as a family.

Discovering Applied Behavioural Analysis (ABA)

Following the lack of professional support we received, I knew I had to take control of the matter and do something myself. I began to do my own research into autism and how it could be treated. After spending few hours I came across early intensive behavioural intervention (EIBI) and Applied Behavioural Analysis (ABA). ABA comprises specific teaching methods developed through extensive research and involves teaching in a systematic manner by breaking down tasks. Intervention is structured so that appropriate behaviours such as play, language and socialisation are maximised through prompting and positive reinforcement.

In a blog by Professor Richard Hastings, ABA for children with autism is described as ‘a values-driven, child-centred, developmentally-informed, evidence-based, effective use of principles of learning to help children with autism achieve their full potential.’ (1)

I decided to start an early intervention programme as soon as possible with my daughter, as she had lost so much time already. Recent research has shown significant gains from early behavioural intervention on children’s early skills (cognitive skills, joint attention, play and stereotypic behaviour), with the greatest gains seen in the children who entered treatment prior to their second birthday. (2)

When my daughter was three, we started the UCLA Young Autism Project model of ABA founded by Dr Lovass (3) as it was a dynamic model and tailored to the needs of the child, while relying on behavioural principles and supported by extensive research (4 ). The programme is specifically focussed on my daughter’s speech and language, communication, play, social and self-help skills.

The only providers in the UK I could find were UK Young Autism Project (UKYAP), who offer ABA trained consultants to design a personalised ABA intervention for the child and give face-to-face supervision and support to help parents and/or tutors implement the programme. The UKYAP consultant made visits every 2 weeks, as my daughter’s needs and the teaching methods used needed to be reviewed often as well as regular evaluation of progress. The programme required at least 35 hours of teaching per week and is best to be done in a homebased setting to begin with. Through this type of early intervention, UK Young Autism Project report that ‘a sizable minority of children have been able to achieve normal educational and intellectual functioning by seven years of age. For those that do not achieve typical levels of functioning, significant improvements in language and other important skills have been achieved, while inappropriate behaviours decreased’ (5 ).

I thought this was totally amazing as some of these children wouldn’t otherwise be able to reach such goals.
I soon found out that this intervention was not cheap. I couldn’t afford to hire tutors so I decided that I would do some of the hours myself and try to get volunteers from the Psychology Department at the local University, which I manged to do. Parental commitment is needed as consistent teaching is important and to follow through and generalise the skills into daily life. My daughter’s programme is now funded by The Giving Tree Foundation for a year and we have weekly visits from the UKYAP consultant and the tutors are provided by UKYAP. This has taken her ABA programme to the next level, with consistent teaching that is much more effective for her learning and huge support for myself.

The progress we saw following ABA

My life changed as I managed my daughter’s ABA programme, liaising with tutors and working towards her targets, but within a week of starting the programme she was sleeping better and she was matching items within a few days. Imitation was the biggest gain I feel she made in the early days of the programme. This was a little girl who couldn’t copy others but now she looks and tries to copy those around her. Each task had to be repeated several times a day and tasks were broken down to help her understand them. The reinforcement used motivated her and any prompts given were faded out. Each day she spent learning at a pace suited to her and we felt the methods were very effective.

She is now catching up on some of her delayed skills including gross motor, fine motor, imitation, some play skills, matching colours, shapes and so much more. She is learning to read and write. She can dress and undress herself. Her eating issues have been resolved and she is now toilet trained. She can sit nicely and do a 20 piece puzzle independently with an adult giving her praise to continue. She has made amazing progress in 2 years. She is beginning to say words and is able to express her needs through PECS and now tries to interact with others, she smiles back and responds to every call of name. We get to see those beautiful eyes staring right at us. All of these are priceless to us, I never thought this would be possible in such short time.
What I learned from my journey is that if you want your child do well in life, you have to take control of the matter yourself. The system does not seem to be offering early intensive behavioural intervention (EIBI) for every child that might benefit from it, when there is clear evidence that it is key from a young age. I strongly believe we need invest into their future now and not in 20 years when billions will need to be spent on the many young adults with autism that will need significant support.

I have struggled in running my daughter’s ABA programme, it has been the biggest challenge of my life but I was not going to let her down and prevent her from having the best education possible. If you find yourself in the same position as me and feel unsupported, I recommend doing some research yourself to find out about evidence based interventions like EIBI.

©Razwana Mushtaq 2017, 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 Hastings, R.P. (2012) What is ABA for children with autism? Prof Hastings’ blog. Available online http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html [Accessed 01 August 2017]
2 MacDonald, R., Parry-Cruwys, D., Dupere, S., Ahearn, W. (2014) Assessing progress and outcome of early behavioural intervention for toddlers with autism. Research in Developmental Disabilities 35, 3632–3644
3 Lovaas, O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
4 Eldevik, S., Hastings, R.P., Hughes, J.C., Jahr, E., Eikeseth, S., & Cross, S. (2009) Meta-analysis of Early Intensive Behavioral Intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38, 439-450.
5 UK Young Autism Project (2009) Our commitment to providing the most effective treatment for autism [Accessed 01 August 2017]

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

How behaviour problems can affect family life

Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.

“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.

As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.

The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.

I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.

What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.

For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.

Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has 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 may ultimately lead to greater resources being available for families like ours.

Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.

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 telephone: 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.

Social Care Guides – England and Wales

social care guidesOne of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.

The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.

We have therefore developed two guides on social care, one for England and one for Wales which explain the different systems.

We would particularly recommend them to anyone moving between the two countries.

SEN Reforms in England and Wales

sen reformsIn England, the special educational needs (SEN) reforms introduced in September 2014 continue to be rolled out.

Although all SEN statements should be converted into Education, Health and Care (EHC) plans by April 2018 recent government figures show that 45% of the statements are still in place with only 19 out of the 152 English local authorities currently on track to meet the deadline.

Clearly, many families are still waiting for statements to be converted to an EHC plan and they can get more information about the process from our guide on Education in England: Statements of Special Educational Needs: A Guide for Parents.

However, those families undergoing assessment for an EHC plan, and those who already have one, will find the information they need in the recently revised guide Education Health and Care (EHC) Plans. (Education in England: A Guide for Parents).

Meanwhile in Wales, the Welsh Government’s proposed SEN reforms, which it hopes will pass into law at the end of the year, continue with the Additional Learning Needs and Education Tribunal (Wales) Bill being scrutinised by the Welsh Assembly.

At the same time a consultation is being carried out on how the reforms should be introduced. For now, however, nothing has changed and the current system remains in place meaning that parents can continue to request an assessment for a SEN statement. Information on the Welsh system can be found in Education in Wales: A Guide for Parents.

Life online for young people with SEN

Dawn Cavanagh

Dawn Cavanagh

Dawn Cavanagh, whose teenage son has autism, considers the benefits and challenges of life online for young people with special educational needs (SEN) and discusses ways to teach young people with SEN to navigate the internet safely, while making the most of what the internet has to offer.

Like it or not we are living in a digital age. Today, you can get online anywhere, at any time, and can communicate with almost anyone in the world. Ensuring that young people make the most of the exciting opportunities the internet has to offer, while also being helped to stay safe online is high on the public agenda. But what if your child has special educational needs (SEN)? What then?

Children with SEN include those with emotional, social or behavioural difficulties, learning difficulties, and other complex needs. There are many ways in which young people with SEN are vulnerable to danger on the internet. Children with SEN (and especially those with a diagnosis of autism) may make literal interpretations of content online, which may affect how they respond; they may not understand the concept of friendship, which may lead to them being more trusting than their peers. They may also struggle to make judgements about what information is safe to share or not recognise that they are being bullied. Furthermore, they may not appreciate how their own behaviour may be construed by someone else as bullying.

However, it is not all doom and gloom. There are benefits to using the internet for young people with SEN. The internet can be used in creative and fun ways to support learning and social interaction. For my teenage autistic son, the interactive online gaming phenomenon Minecraft allows players to build and create textured cubes in a 3D virtual world. Minecraft enables my son to have complete control of his environment and to engage in his special interests: time travel and Doctor Who. There is nothing he loves more than jumping in and out of his tardis, exploring new dimensions. Minecraft has helped to nurture his conceptual thinking, so that he has become more adept at problem solving. For example, he has worked out how to operate the tardis without any instruction. Whilst my son gets confused and distressed by others’ attempts to join him in his gaming, some young people with autism benefit from Minecraft’s multiplayer mode, which can help develop their communication and social skills, as well as enhance their creativity.

AutCraft (Duncan, 2015) is a Minecraft server specifically for autistic children and their families. The environment has been modified so that players can roam free from the dangers frequently encountered in the game’s regular modes. While all this is good, the downside of Minecraft is that like so many video games it has the potential to become addictive. This is especially concerning for children with autism who may have tendencies towards obsessive compulsive type behaviour. Excessive screen time is a recurring concern for many parents, especially in terms of time spent away from family, as well as lack of exercise.

Young people with SEN are at greater risk of cyberbullying, online grooming and exposure to inappropriate content, yet less research has been conducted in this area compared with the mainstream population. Of the body of research that currently exists, the risks for a young person with SEN appear to be more profound due to increased vulnerability and social naivety. As a group they are more likely to be lacking in sexual knowledge, have difficulties with compliance or expressing consent, as well as recognising abusive situations. Furthermore, they are less likely to have opportunities to have romantic or sexual partners, so may seek the company of strangers online and offline when lonely (Normand and Sallafranque-St-Louis, 2016).

Research has revealed that many young people with SEN have experienced cyberbullying and discriminatory behaviour such as disablist language or jokes about disability online. This can lead to considerable emotional and psychological distress. Research conducted in the Netherlands, looking at the effects of cyberbulling among students with intellectual (learning) and developmental disability, found that higher rates of cyberbullying are associated with lower levels of self-esteem and higher reported depressive feelings (Didden et al., 2009). Research undertaken by the Anti-Bullying Alliance (England and Wales) (2013) revealed that as well as having experienced cyberbullying and discriminatory behaviour many young people with SEN felt that they had not been taught how to use the internet, or to stay safe online. Moreover, some young people used the internet to create an anonymous persona to hide their disability or actively avoided the internet altogether.

A more recent study (Bannon, NcGlynn, McKenzie and Quayle, 2015) investigating the perception of online risks by young people with SEN (aged 13-18 years) in Scotland revealed that while many young people with SEN were aware of a range of risks online, and could discuss how to stay safe, not all were able to put appropriate safety strategies into practice. Some described befriending strangers on the internet. There were examples of intentional risk taking, perhaps due to peer pressure to perform. For others risk-taking in their online behaviour appeared to be linked with poor understanding of the implications of their actions and/or difficulties with inhibitory control.

There was much variation in supervision and monitoring of online behaviour, with some families putting no supervisory strategies in place, whilst others blocked access to certain content, checked history and/or placed limits on the amount of time the young person spent online. Interestingly, while some young people sought the advice of parents, and occasionally teachers, about managing online risk, many also took the opportunity to learn from peers, especially if they thought that disclosure to a family member was likely to result in removal of internet privileges. Further research is needed, perhaps including parents and teachers, in terms of how best to support young people with SEN to stay safe and strong online, whilst making the most of what the internet has to offer.

So, how do we teach young people with SEN to navigate the internet safely? The first thing is to recognise that life online presents young people with SEN with different challenges, and then to tailor strategies accordingly.  Cerebra (cited in Digital Parenting, 2016), the UK charity dedicated to improving the lives of children with neurological conditions, make the point that young people with learning difficulties can sometimes be more trusting of strangers than other young people. The Cerebra guide (cited in Digital Parenting, 2016) suggests encouraging the young person to use a pseudonym (a fictitious name) online and getting him or her to seek help from a trusted adult if anyone asks for personal information, such as their address or where they go to school. The young person might also benefit from joining an online community that has been specifically set up for people with learning difficulties.

Further suggestions for limiting risk online for children and young people with autism and learning disabilities is available in Cerebra’s guide: Learning Disabilities, Autism and Internet Safety, available on Cerebra’s website.

©Dawn Cavanagh 2017, 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

Anti-Bullying Alliance (2013) Cyberbullying and children and young people with SEN: the views of young people. Retrieved 13th February 2017. Available from https://www.anti-bullyingalliance.org.uk/sites/default/files/field/attachment/disabled-young-peoples-views-on-cyberbullying-report.pdf

Bannon, S., McGlynn, T., McKenzie, K. & Quayle, E (2015). The internet and young people with Additional Support Needs (ASN):  Risk and safety.  Retrieved 13th February, 2017. Available from http://www.sciencedirect.com/science/article/pii/S0747563215000321

Normand, C.L. & Sallafranque-St-Louis, F (2016). Cybervictimization of Young People with an Intellectual or Developmental Disability: Risks Specific to Sexual Solicitation. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/25871891

Didden, R., Scholte, R.H.J., Korzilius, H., Jan, M. H., Moor, D.E., Vermeulen, A., O’Reilly, M., Lang, R., & Lancioni, G.E (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/19466622

Digital Parenting (2016). Vodaphone UK. Retrieved 13th February, 2017. Available from http://www.vodafone.com/content/digital-parenting.html

Duncan, S (2015). Autcraft.  Retrieved February 13th, 2017. Available from http://www.autcraft.com/

Useful links:

Anti-Bullying Alliance: http://anti-bullyingalliance.org.uk/

Autcraft:  http://www.autcraft.com/

Digital Parenting website:  http://www.vodafone.com/content/digital-parenting.html

Digital Parenting magazine: http://www.vodafone.com/content/digital-parenting/learning-and-fun/digital-parenting-magazine.html

Special Friends (Free online community for people with learning disabilities, and their parents and carers): http://www.specialfriends.com/public/

Video Game Addiction Helpline: http://www.videogameaddiction.co.uk/gaming-addiction/minecraft.html

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