Some questions about AIMS-2

News

Written by: Panda Mery, Dinah Murray & Kabie Brook

Last month, the Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials) was launched as the largest ever grant given to autism research – €115 million, with money coming from the EU, pharmaceutical companies and charities.

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PARC Critical Autism Studies Conference 18th July – Schedule Announced

Events

The PARC Critical Autism Studies Conference will be held at London South Bank University (LSBU) on the 18th July from 9.30am – 7pm, Keyworth Building, Keyworth Street. Places are limited, but if you wish to register to attend please email damianmilton.sociology@yahoo. com. Please see below for the schedule of speakers:

A Public Statement on Respectful and Responsible Presentations on Autism

News

Inspired in response to Dr Iain McClure’s presentation at the National Autistic Society Professional Conference, March 2018

Report on Autism, Identity and Violence workshops

News

The third PARC workshop on Autism, Identity and Violence focused on issues of institutionalised violence.

Special Issue Call for papers from Advances in Autism: Inclusive educational practice for autistic learners

News

This special issue of the journal Advances in Autism aims to bring together leading experts and cutting-edge research in the field of education with autistic students across the age range in order to further research knowledge that is transferable to teaching practice.

Launch of the National Autistic Taskforce

News

The launch of the National Autistic Taskforce (NAT) was announced at an event at the House of Lords on 12th December 2017. The following is a speech that was made introducing NAT by Dr. Damian Milton who will be taking up the position of Project Leader. http://nationalautismproject.org.uk/national-autistic-taskforce

Creating a More Autism Friendly HE Environment – meeting report

News

By Dr. Susy Ridout

The second PARC event held at Birmingham City University (October 17^th) explored Creating a More Autism Friendly HE Environment. Speaker Jonathan Gadsby was invited to talk about the ‘Survivor Movement’ in mental health and how information from work in this area might inform research and debate in the area of autism.

PARC to host the Hub 1 Theatre and ‘Autism Meets’ space at the Autism Shows in 2018

News / Events

PARC have agreed to host and manage the talks by autistic speakers at the Hub 1 Theatre as well as the ‘Autism Meets’ space at the Autism Show 2018 at all three venues (London 15^th-16^th June, Birmingham 22^nd-23^rd June, and Manchester 29^th-30^th June). The ‘Autism Meets’ space will be available for speakers to talk to audience members before and after their main talks, and where speakers will be able to sell their own services and materials if applicable.

PARC (West Midlands) – report from first meeting 12/09/17

News

By Dr. Susy Ridout

PARC (West Midlands)

The West Midlands region began with its first PARC event on September 12^th 2017. The theme of the event was:

Use of diverse methods for bringing together autistic and non-autistic individuals in the H.E. environment to explore wellbeing.

Participators

The event attracted a diverse audience from around the country, and individuals came from a wide array of backgrounds: researchers (local, regional, national and internatonal), autistic activists, mentors, nurses, lecturers, clinical psychologists, student union officers and individual students from a number of universities.

Main Speaker

The event was opened by a student attending BCU, Seb Stafford-Cook. The presentation gave much food for thought as it addressed issues of terminology, the impact of this terminology, bullying and feeling different and isolated in school. Seb highlighted his experiences whereby some teachers had either failed to respond to bullying, or had responded inappropriately, leaving him even more frustrated and distressed. This subsequently resulted in feelings of anger and depression which he felt unsupported in managing.

Many of the issues touched on were ones that had been experienced by others present, and this encouraged questions from the audience. In particular, people were interested as to how Seb now situated himself regarding autism given that past experiences and imposed terminology were so negative. This opened the doors for a wider debate which was then taken forward into the next part of the conference as familiar ground and interest were established.

Introduction to PARC

Dr Damian Milton was then introduced as the Chair of PARC, and he explained its purpose, namely to bring autistic and non-autistic individuals and organisations together to work in a participatory manner researching key aspects from the agenda set by autistics. Other important areas of work and research, where autistic individuals had a voice were highlighted e.g. Autonomy, Autscape and the Cygnet Mentoring Project, and this event emphasised the importance of sharing information across ages, sectors and interest groups.

Workshop Activities

Dr Susy Ridout then introduced the format of the remainder of the day, where people first got into groups to explore similarities and differences between:

• What works in the H.E. environment and contributes to your wellbeing/ makes you feel good?
• What does not work in the H,E. environment and contributes to you feeling mentally, physically, or emotionally distressed?

 

The groups initially discussed these, with a notetaker writing down key points. Prompts were taken from Seb’s talk if needed, and then these were drawn together to clarify messages being made.

(N.B. permission has been given by individuals for the following photos to be used on this site, and they are not necessarily attached to the expressed views above/below which they sit).

Themes raised relating to autistic students’ wellbeing

Understanding

• Lack of understanding of both autism and the autistic individual
• Need for a friendly autism-aware environment
• Good awareness and knowledge
• Staff and colleagues having an awareness and knowledge about autism – but this needs to be good awareness and knowledge, not harmful stereotypical knowledge
• Covert or accidental discrimination – bred from ignorance of autism as a difference as opposed to a disability – such as twisting what you say, not understanding or even asking about your needs
• Need for helpful disability services
• Clarity and good, organised communication

Mentoring

• Lack of understanding about role of mentors
• Appropriate matching of mentors – how does this work?
• Who quality checks work of mentors? Are they qualified to do this?
• Need for mentors who do understand as they can empathise
• Mentors need to be skilled and supported
• Mentoring helps navigate through difficult times
• Person-centered approach
• Positive and negatives of mentors and disability support services – varies throughout universities, some provide good support and others do not

Information

• Helpful when colleagues send emails with good, thorough information

Bullying and discrimination

• Subtle bullying of autistic staff and students
• Need for communication support with help from University
• Is a diagnosis always helpful? Change in attitude by staff
• Covert and accidental discrimination – support systems not person-centered
• Being understood by line manager and colleagues
• Something that can be quite detrimental in HE is the general use of neurotypical practices such as ways of working in classes which are inflexible (e.g. group working, presentations etc.) – this is discriminatory practice

Safety and environment

• Sensory impact of busy spaces, especially entrances
• Need for quiet spaces to allow individual to take control of anxiety
• Improved signage to facilitate navigation of new environment
• Perhaps have help centre areas
• Consistent amongst all universities are the building spaces – noisy libraries, no space to take yourself away from things (safe space), however useful that most universities have similar signage (such as room numbers that correspond with the floor you are on), which is helpful in reducing anxiety

Social

• Social media can work
• Social clubs need to have information beyond Freshers’ week
• Clubs need to be more informal so students can opt in and opt out

Wellbeing

• Wellbeing teams have an important role
• Quiet spaces are necessary
• Tutors and staff generally are key to supporting students emotionally
• Good understanding and support from colleagues contributes towards a positive wellbeing working in HE – when this doesn’t happen often leads to barriers for example if colleagues apply a stereotype of autism to you and treat you as though you are disabled

Future

• Raise awareness about options beyond current course/university
• Look at employment sector

Celebrate Diversity

Involve all staff and students even in student-led groups

Call for papers

News

Critical dialogues on neurodiversity: A Special Section of Scandinavian Journal of Disability Research

Special Section editors: Damian Milton, Mitzi Waltz & Hanna Bertilsdotter Rosqvist