Survey on improving education for children on the autism spectrum

A message from the National Autistic Society:

“Right now there is a parliamentary inquiry into the provision of education and support for children and young people on the autism spectrum in England. This is an important opportunity to feedback what you’d change about the current education system so it better supports children on the autism spectrum.

The All Party Parliamentary Group on Autism wants to hear from parents, carers and young people about your experiences of the special educational needs system and what needs to change. Please complete the survey before 10 July 2017 and share your views.

To complete the survey, click on this link.

This survey is for parents of children and young people up to the age of 25, if they are still in school or at a further education college. (We are not looking at experiences of higher education – university – at present, as it is not covered by the 0-25 SEND system.)”

Launch of Sheffield Autism Network Tuesday 4th July

An Invitation from Liz Friend and Sylvia Johnson:

Sheffield has a large number of groups who work with autistic people, from the very young to the very old.

We are two parents involved with the autism community in Sheffield and we think it would be useful for Sheffield to host and maintain an Autism Network, so that organisations and individuals can share information about things they are doing, and can identify priorities for action in Sheffield that will not only help enhance services but will also help make Sheffield a more autism-friendly place to live, whatever your age.

We hope the Network will be able to inform the work of the newly established 0-25 Autism Strategy Group and the Sheffield Autism Partnership between Sheffield Council, the local Clinical Commissioning Group, families and autistic adults.

We also hope to collectively build on local work to engage businesses and the private sector, arts and film venues, and employers.

Finally we hope that some of you will become involved in helping to move autism provision and autism-friendly environments forward in the city.

We are holding an inaugural meeting of the Network
on Tuesday 4th July 5.30pm to 7pm
Room 12.4.18 in the Charles Street Building of Sheffield Hallam University.
(Level 4 Room 18, entrance on Charles Street itself)

Here you can download the programme for the meeting 4 July 2017 and a map showing where the meeting will be held.

We understand that some people may wish to be involved but are unable to attend the meeting and will vary the times of meetings to try to accommodate different needs. We also hope to establish a social media presence so that it is easy for individuals and groups to share information.

We look forward to seeing you on the 4th July and hope that you find the Network useful in the coming months and years.

Please circulate this invitation to others you know who may wish to become involved.
Best wishes

Liz Friend and Sylvia Johnson

Liz Friend
07986595925

Sylvia Johnson
07768844620

Autism Show – Manchester Friday 30 June

Message to members of Sheffield Autistic Society about the Autism Show – from Liz Friend

Hi All

The Autism Show, organised by the National Autistic Society, is one of the biggest autism events in the country. Full details of the Manchester event can be found at: http://manchester.autismshow.co.uk/whats/  and you can see a poster for the show here: AutismShow 2017

As it’s a large event then it does create problems for those of us with sensory needs. In response to a question about those with autism attending and whether the venue is suitable for those with sensory needs the National Autistic Society has replied:

“That’s a difficult question for us to answer. You know that person’s needs most. If they have acute sensory issues we would not recommend the exhibition to visit as it can get very busy and noisy, like any other popular public place. However we do have families attending with autistic children and adults on the spectrum visiting and also speaking at the event. We try to make the event as accessible as possible to those on the spectrum by having wider than usual aisles, clear signage, dimmed lighting and a quiet room available.”

I will be going along to the show on Friday 30 June and have arranged a number of tickets for members who wish to come along too. The Autism Show runs from 10am until 5pm on Friday 30 June (and Saturday 1 July) and there is plenty to interest everyone with some really interesting speakers. If you want to come along then please let me know and I will reserve you a ticket. The arrangements are as follows:

· Meet at Sheffield Train Station for 8.50am by the Superdrug shop.

· Take the 9.11am train to Manchester Piccadilly

· Train arrives in Manchester Piccadilly at 10.02am

· Take a bus to Event City where the Autism Show is held (15 minutes journey)

· Arrive at Autism Show approximately 10.30am

· Chance to see speakers/exhibitions/workshops of your choice

· Meet at exit to the Autism Show at 5pm

· Take bus back to Manchester Piccadilly station

· Take the 18.20 train to Sheffield Station

· Arrive Sheffield Station at 19.10

The return train fare to Manchester is £16.00 If you buy advance single tickets for the two trains as above. If you need to have flexibility to leave earlier (or go later) then you can buy an off peak day return for £21.70p which is also valid for the same journey but check for other train times. As train tickets are incredibly complicated I’ve put the link here: https://www.buytickets.crosscountrytrains.co.uk/buytickets/combinedmatrix.aspx?Command=TimeTable

The Sheffield Autistic Society will pay for the tickets for the show and also the transport to and from Manchester Piccadilly station to Event City but you will need to cover the cost of the rail tickets. If anyone is unable to cover the costs of the train ticket then please let me know.

I’m away next week so don’t worry if I don’t respond straight away!!

Best wishes

Liz

www.sheffieldautisticsociety.org.uk

Mental Health and Autism: Carrie’s Story

NB We received this story yesterday 7th June from Autistica autism research:

“As you may know, autism and mental health are closely linked. People in the autism community have told us it’s their main priority for autism research. Autistic people are over 3 times more likely to have a mental health problem, and 9 times more likely to commit suicide than non-autistic people. To show you what this means to people, I’d like to tell you a bit about Carrie, who recently shared her story with us.

Too often, in cases like Carrie’s, autism goes undiagnosed, and the mental health problems this causes go misunderstood. It took Carrie 35 years to get a diagnosis that helped her understand herself and the struggles she had faced all her life. She wanted to share her story to help other people in the same situation and to raise awareness of the link between autism and mental health problems.
Carrie waited years to get a diagnosis

For ten years psychiatrists struggled to pin down a label, admitting I didn’t fit into any box. Eventually they gave up and misdiagnosed me with bipolar disorder, mixed anxiety disorder and borderline personality disorder. My meltdowns were misdiagnosed as “non epileptic seizures” in my early twenties and my intermittent selective mutism was put down to depression… A neuropsychologist first mentioned autism in 2009.
Read Carrie’s Story: Why it took thirty-five years to get my diagnosis

Experiences like Carrie’s show the desperate need for more research into mental health and autism. Greater understanding and improved treatment and support will mean that autistic people are not left to cope alone.”

Sheffield Autism Partnership Board

At their meeting on 22nd May, the Sheffield Autism Partnership planning group adopted a set of draft proposals about the ‘next steps’ for the partnership in Sheffield.

This means that Sheffield now has an Autism Partnership Board, in accordance with the Department of Health Statutory Guidance on adult autism.  The board will work to improve the provision of services and support for autistic adults and their families in Sheffield, including young autistic persons in transition to adulthood.

See here for the full text of the proposals – Draft Sheffield APB Next Steps  – adopted at the meeting, but note that the draft terms of reference for the board have not yet been agreed and are still to be finalised.

For the background to these proposals and further information about the public consultation / survey held during December 2016 to February 2017 see the Partnership page.

Full minutes of the meeting of 22nd May will be published on the Partnership page of this website, as soon as they are available.

Free online course on finding appropriate technological resources for children with autism and/or LD

“SMART-ASD: Matching Autistic People with Technology Resources”

The University of Bath is offering a free online 4 week x 3 hours per week course for parents of children with autism and/or LD. It is about determining the most appropriate technological resources to help them.

“On this course you will get more of an understanding of ASD and ID specifically. Then we will explore how technology can be used to best support this group, introducing you to the SMART-ASD app that identifies the skills and needs of children with ASD and ID so that the most suitable technologies can be identified to support them.”

To find out more about the course  go to this link
NB To join the course you need first to register (free) as a learner with FutureLearn  at https://www.futurelearn.com/

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.