Request for participants: Study about autism and early development in pregnancy

We have been asked by Ezra Aydin, a research student at Cambridge Autism Research Centre to publicise this study and invite potential participants  among pregnant mums with either an ASC diagnosis, or with a child who has a diagnosis and who are happy to come in for an additional 3D ultrasound scan.

“The aim of this research is to see if there are any physical characteristics in pregnancy that might be related to later autistic traits in childhood. The overall aim is to help support children who might be later diagnosed with ASC and their families from as early as possible. The scan is done during late 2nd trimester and early 3rd. Our intention is not to develop a screening for autism in pregnancy, it is to help provide more support for children thought to be ‘at risk’ and their families from an earlier age.”

If you might be interested in participating, you can see more information in Ezra’s letter here: Autism and development in pregnancy.

More changes for carers in Sheffield

Following the loss of funding to the Caring Sharing Project in Sheffield and consequent changes for carers, we report, without comment, the following further change as outlined in the latest Carers’ Centre Newsletter, from which the following is an extract:

“From April this year, there will be a change for Sheffield carers in how they can access a carer’s assessment. As part of how we deliver the new contract, from April 2017 this year if you have a carer’s assessment, your conversation will be with one of the Carers Advisors at the Carers Centre, instead of staff from Adult Social Care at Sheffield City Council.

The Carers Centre has been supporting carers for more than twenty years and is well placed to take on this important role. The single focus of our organisation is carers and our team of staff and volunteers has an excellent understanding of caring and the issues carers can face, often having experience of caring themselves.

So while responsibility for ensuring carer’s assessments are carried out remains with the council, it will be Carers Centre staff who carry out the assessments. We will be working closely with colleagues in Sheffield City Council to ensure a smooth transition and good communication, both between our organisations and with carers.

Importantly, we will continue to consult and work with carers to make sure we carry out this new responsibility taking fully into account what carers tell us is important to them.”

You can read the whole article by downloading the March 2017 Sheffield Carers’ Centre Newsletter.

Anger at government rejection of PIP tribunal decisions and “not really disabled” claim by government policy head

There have been many expressions of anger and disbelief at the government’s recent action in rejecting two tribunal decisions in connection with PIP (Personal Independence Payments) and in particular at the statement by George Freeman MP, head of Theresa May’s policy unit.

See for example these recent articles from the Guardian here and here.


NICE propose that an autism register is maintained in each GP practice

Statement from the National Autistic Society:

“NICE has today released its menu of potential new indicators. This looks at what information should be required of local commissioners and what should be required of individual GP practices.

Following on from our charity’s Autism Diagnosis Crisis campaign, which many of you signed up to and helped us with (and thank you for that too!), NAS and the RCGPs have been talking with NICE about these indicators and managed to persuade them that they should pilot an autism register in each GP practice. The idea behind this being that GPs will know that a person is autistic and be able to make reasonable adjustments to a consultation more easily. They will also be able to keep in touch with autistic people better and ensure that they are accessing primary care. This is similar to the existing Learning Disability Register. NICE have been piloting this.

The proposed menu that has opened for consultation today proposes that a Quality Outcomes Framework (QOF) indicator be established for an autism register in each practice. QOF exists to change GP behaviour and make sure things are recorded (it’s the reason you had your blood pressure checked the last time you went to the GP).

The consultation is open until 8 March and we will be responding to (strongly!) encourage NICE to take this proposed indicator forward as a means to ensure that primary care data is improved.

The consultation is here:

Request for volunteers to take part in research at the Autism Research Centre , Cambridge University

We have received this request from the Autism Research Centre at Cambridge: “We are currently interested in recruiting additional participants for our research database. Registration is completed online ( and those who choose to sign up will have access to many different studies both online and in person. Please forward the attached flyer and this information to any adults (over 16 years old) diagnosed with autism spectrum conditions or parents of children (under 16 years old) with a diagnosis on the autism spectrum.”

If you think you may be interested in taking part in this research, you can download the flyer here: ARC Flyer Aug2016

Cuts to Social Care – That BBC ‘Today’ Interview 17th February 2017

Much of the recent debate about funding for social care has focused on older people but a third of all social care users are working-aged people with disabilities. In the BBC’s Today programme (17th February 2017) John Humphreys interviews Carole Ross, the mother of a severely autistic child, and Liz Sayce the chief executive of Disability Rights UK.

Liz Sayce talks about the social care crisis: she discusses better ways for local authorities to provide social care by proactively working with disabled people and how such support is threatened by major cuts to care packages.  Listen to the excerpt here:

Interestingly at the start of this section you will hear John Humphreys refer to autism as a “disease”. How far are we from widespread understanding of the condition?



ASDA, Tesco & Morrisons Introduce New Accessible Toilet Signs Recognising ‘Hidden’ Disabilities

See article on Disability Sheffield’s blog page:

The Independent reports that “the new signs will urge customers to remember not all disabilities are visible.

The signs are intended to make people with conditions like Crohn’s disease, autism, anxiety, and inflammatory bowel disease feel they can use disabled facilities without facing criticism from other shoppers.”



Sheffield Autism Partnership Consultation launched

The Sheffield Autism Partnership Steering Group are holding a consultation period, from Monday 19th December to 13th February 2017. There is a survey form for anyone in Sheffield who is affected in any way by an autism spectrum condition, or for anyone at all who is interested, to complete.

“The Steering Group would like to suggest how an Autism Partnership for Sheffield could work but we would welcome your views. We have written this survey to find out what you think. The survey closes on 13 February 2017. We hope that the Partnership will start work as soon as possible after that date.”

You can respond to the survey in different ways: