Transforming care: the challenges and solutions

Voluntary Organisations Disability Group | June 2018 | Transforming care- the challenges and solutions

VODG (Voluntary Organisations Disability Group), have produced a report that identifies the learning from the Provider Taskforce’s project.  The primary aim of the pilot was to develop support assessment and proposals for 27 people originally from London who have been in inpatient settings for longer than five years.

Transforming care
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This report sets out the work carried out, the learning and recommendations for
next steps both in London and nationally.  Its purpose is to share learning. It is not a formal evaluation, nor a proposition for the provision of services, but offers insight into the challenges and solutions in delivering the “transforming care” agenda. VODG acknowledges that there are improvements that need to be made across the system, including for community-based providers (Source: VODG).

US study uses phone app to screen for autism

Science Daily | June 2018 | Mobile app for autism screening yields useful data

A new US study that uses a smartphone app to screen young children for signs of autism has found the application produces reliable data. It was also accessible for children and praised by caregivers (via Science Daily). 
During the year-long  there were over 10000 downloads of the app; parents completed more than 5000 surveys and uploaded 4441 videos. These data were collected, 88 per cent of the videos yielding useful data.  The app uses video footage of the adolescents filmed while watching films and designed to identify patterns of emotion and attention, autism risk factors, on the device.  The videos are then analysed by behavioural coding software which tracks the child’s response and quantifies their emotions and attention.

A member of the research team Geraldine Dawson, Director of the Duke Center for Autism and Brain Development, remarked “This demonstrates the feasibility of this approach.

“Many caregivers were willing to participate, the data were high quality and the video analysis algorithms produced results consistent with the scoring we produce in our autism program here at Duke.”

The full news article is available from Science Daily 
The study has now been published in the open access journal npj Digital Medicine. It can be accessed through Nature 

Full reference:

Egger, H. L. et al .| 2018| Automatic emotion and attention analysis of young children at home: a ResearchKit autism feasibility study |npj Digital Medicine| Vol. 1 |DOI: 10.1038/s41746-018-0024-6

University of Huddersfield researchers: Children with autism do engage in imaginary play

University of Huddersfield | May 2018 | Children with Autism are able to create imaginary friends 

A new study demonstrates that children with Austistic Spectrum Disorder (ASD) are able to create imaginary friends. This challenges previous research that suggests children with autism are unable to engage in imaginary play (via Science Daily).


The researchers used over 200 questionnaires completed by UK and US parents of children diagnosed with ASD and parents of children with typical development (TD). Although the findings show that children with a diagnosis of ASD were less likely to create an imaginary friend (16.2 per cent) compared to 42 per cent of their TD peers; they were older when they begin engaging in this kind of play, and were also more likely to play with a   “personified object” such as a stuffed toy or doll. The researchers argue that there is no difference in the quality of the play the children engage in.

According to Dr Paige Davis, of the University of Huddersfield and the lead author of the study: “The finding that children diagnosed with ASD even spontaneously create such imaginary companions refutes existing beliefs that they are not imagining in the same way as typically developing children.”

The press release is available from the University of Huddersfield 

The article is published in the Journal of Autism and Developmental Disorders, it can be requested by Rotherham NHS staff here 


New study finds CBT helps children with ASD to regulate their emotions

Science Daily|Cognitive behavioral therapy can improve emotion regulation in children with autism

A Canadian study that examined the impact of cognitive behavioural therapy (CBT) on young children with autism spectrum disorder (ASD) found that children assigned to the intervention (CBT) group demonstrated improved emotional regulation, compared to those in the control.  The 68 children who participated in the study each received 10 sessions of CBT intervention, this was intended to improve their emotional regulation and   This study is the first of its kind to demonstrate the benefits of CBT extend beyond treating anxiety (via Science Daily). 



Mental health problems are common among individuals with autism spectrum disorder (ASD), and difficulties with emotion regulation processes may underlie these issues. Cognitive behavior therapy (CBT) is considered an efficacious treatment for anxiety in children with ASD. Additional research is needed to examine the efficacy of a transdiagnostic treatment approach, whereby the same treatment can be applied to multiple emotional problems, beyond solely anxiety. The purpose of the present study was to examine the efficacy of a manualized and individually delivered 10‐session, transdiagnostic CBT intervention, aimed at improving emotion regulation and mental health difficulties in children with ASD.


Sixty‐eight children (M age = 9.75, SD = 1.27) and their parents participated in the study, randomly allocated to either a treatment immediate (= 35) or waitlist control condition (= 33) (ISRCTN #67079741). Parent‐, child‐, and clinician‐reported measures of emotion regulation and mental health were administered at baseline, postintervention/postwaitlist, and at 10‐week follow‐up.


Children in the treatment immediate condition demonstrated significant improvements on measures of emotion regulation (i.e., emotionality, emotion regulation abilities with social skills) and aspects of psychopathology (i.e., a composite measure of internalizing and externalizing symptoms, adaptive behaviors) compared to those in the waitlist control condition. Treatment gains were maintained at follow‐up.


This study is the first transdiagnostic CBT efficacy trial for children with ASD. Additional investigations are needed to further establish its relative efficacy compared to more traditional models of CBT for children with ASD and other neurodevelopmental conditions.


Full reference: Weiss, J.A., Thomson, K.,   Burnham Riosa, P.,  Albaum, C.,  Chan, V.,   Maughan, A.,  Tablon, P., Black, K. |  A randomized waitlist-controlled trial of cognitive behavior therapy to improve emotion regulation in children with autism |Journal of Child Psychology and Psychiatry |  2018; DOI: 10.1111/jcpp.12915

Rotherham NHS staff can request the article here  


Science Daily Cognitive behavioral therapy can improve emotion regulation in children with autism

Stopping over medication of people with a learning disability, autism or both (STOMP) case studies published

NHS England | Publications | April 2018 

STOMP (Stopping over medication of people with a learning disability, autism or both) is an initiative which aims to encourage patients to have regular check ups, ensure doctors and health professionals involve people, families and support staff in decisions about medication, inform everyone about non-drug therapies and practical ways of supporting people. Now NHS England has produced five case studies which are relevant to people with a learning disability, autism or both and their families.

The case studies can be read by clicking the links below

A bright future for Graham 


Further details about STOMP can be found at NHS England 


Autism strategy updated

Department of Health and Social Care  | April 2018  | Think Autism strategy: governance refresh 2018

England’s first Adult Autism Strategy, Fulfilling and Rewarding Lives, (2010)  affirmed a  commitment from Ministers across government to transform the support for and
experience of autistic people. In April 2014, the Strategy was updated in
Think Autism, supported by revised Statutory Guidance in March 2015.

autism refresh
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Think Autism strategy: governance refresh 2018 is a response to an agreement in 2017  that the arrangements for overseeing implementation of the Strategy should be refreshed.  Although the Strategy itself has not changed, the implementation activities required to deliver its intended outcomes, and who will do what, have been clarified. This has returned the focus to delivering what is required by the Autism Act and Statutory Guidance, in a realistic and measurable way.

An updated governance model to oversee implementation of the Strategy has been established, this focuses  on 19 overarching strategic objectives, these are grouped under the headings:

  • Measuring, understanding and reporting needs of autistic people
  • Workforce development
  • Health, care and wellbeing
  • Specific support
  • Participation in local community

    The full policy paper can be downloaded from Department of Health and Social Care

6 ways to improve services for people with autism

Healthwatch  |  March 2018  | Six ways we can improve services for people with autism

Healthwatch have published six recommendations to improve services for individuals with autism; these are based on consultation with people with autism, their families and carers about their experiences of health and care services.  Patients with autism may find accessing health and care services problematic and stressful, as new environments and sensory changes can cause anxiety, it is crucial therefore that health professionals have an awareness of individual’s needs and an understanding of how they can make the experience as easy as possible (Healthwatch). 


1.   There’s a lack of awareness and understanding of autism among some health and care professionals.

Discussion suggested some health professionals, particularly GPs, have a lack of understanding about autism and knowledge about appropriate services to refer them to. Services can help by ensuring their staff are trained to meet the needs of people with autism.

2.   Health and care settings aren’t always flexible enough to adapt to their needs.

Health and care settings should provide more flexibility to adapt to autistic people’s needs. For instance, parents who have an autistic child  told Healthwatch that GP appointments are often not long enough to meet the needs of people with communication difficulties.

Healthwatch recommend health and care settings should provide more flexibility to adapt to autistic people’s needs.

3.   Waiting times for diagnosis can be long.
People have told Healthwatch they can experience long delays in being diagnosed.  Delays in diagnosis mean longer waits for treatment and support, especially at school for children.

4.   Many people with autism aren’t receiving the support they need.

Healthwatch noted a lack of support while waiting for an assessment, added to the pressure on parents and carers and caused unnecessary stress to people with autism.

In some areas, there’s also a lack of support services for people living with autism, including getting an education and health and care plan, and employment and independent living support.

5.   People need more comprehensive and accessible information on the services available.

People with ASD are not always aware of  what autism services are available, lack of information can be a barrier to accessing this support.

Parents and carers would also like more information and training about autism and their role as a carer, so they can better meet the needs of the person they are caring for.

6.   There is a gap in mental health support for children and young people with autism
Accessing children and young people’s mental health services can be an issue for people with autism.

In some cases, young people have been refused support from mental health services, as they say they cannot meet the needs of patients with autism. This often means services aren’t tailored to people’s specific needs, and they either receive no treatment, or the support they do get isn’t effective.