April: AUTISM LEVEL-UP Month

Traditionally April has been called Autism Awareness month.

This year staff at Children’s Health Ireland (CHI) celebrate AUTISM LEVEL-UP month. This campaign rejects the notion of autism awareness being good enough and challenges us all to level-up based on the following levels:

• AWARENESS
• ACCEPTANCE
• APPRECIATION
• EMPOWERMENT
• ADVOCACY

The brainchild came from two people – Dr Amy Laurent who is an Occupational Therapist and Psychologist (Co-author of SCERTS Programme) and Dr Jacquelyn Fede who is a Psychologist and is herself autistic. For more information, visit https://autismlevelup.com/ 

The campaign reflects the evolving landscape in the field of autism where more voices of autistic people are influencing research and public discourse. We know that the very best thing you can do to help autistic people is to learn from the autistic community.

CHI is taking an active role in this campaign by meeting people where they are and encouraging them to take the next step to support autistic people, by leveling up.

In addition, we have invited autism expert, Ms Sharon McCarthy, to host a webinar for all staff this month. Sharon Mc Carthy is the founding director of Autism Journeys Training and Consultancy service. She has extensive experience in supporting both autistic children and young people and their families, particularly in relation to understanding what it means to be autistic and the strengths that are inherent to autism. She frequently delivers training to different organisations to ensure best practice is adhered to and that the person’s voice is central to any and all decisions pertaining to them.  Sharon is the ‘Autism journey’s’ podcast creator and author, and also designs and delivers autism centric courses in the Cork College of Commerce. She is the author of the comprehensive visuals programme and book “Supporting Autonomy, Visual Strategies to Set the Autistic Child up for Success” and is a parent to multiply-identified autistic children for more than 20 years.

We hope our staff in CHI will gain from this experience and we look forward to welcoming Sharon as she shares her knowledge and experience with autism.

Chief Executive, Eilsh Hardiman with Dr Ciara Martin, Clinical Director and Paediatric Executive Lead in the multi-sensory area in CHI at Connolly, Blanchardstown.

Resources for young autistic people when they attend CHI

Our teams on all our sites work together to ensure the needs of every child we treat are met, and across our sites in CHI we have fantastic resources for the autistic young people who attend for treatment or clinic appointments.

Multi-Sensory spaces:

Children who have sensory sensitivities and their parents, often find a trip to the hospital a challenge. A hospital is a busy environment with bright lights and loud noises. Children’s Health Ireland, (including its four locations at Tallaght, Temple Street, Crumlin and Connolly in Blanchardstown) use multi-sensory spaces to help take the stress and anxiety out of a hospital visit for both children and their parents. 

A multi-sensory room/space is a specially equipped space that uses equipment like fibre optics, low levels of lighting, wall projections, tactile objects and twinkle lights to create a unique environment that helps with relaxation and escapism for children and young people.  These spaces can benefit autistic children and young people, those who have learning difficulties, developmental disabilities, sensory impairments and brain conditions like dementia.

Play:

Play is used to prepare children for treatment, distract them during a procedure, and help them understand what they have experienced.  Our Play Specialist teams will meet with children to go through any given treatment and make the experience positive and child-friendly. Play Specialist teams try to make children’s experience of hospitalisation as positive as possible. This is achieved by explaining everything in a child friendly way. 

New children’s hospital:

The new children’s hospital will be a world class facility to look after children and young people from all over Ireland who have complicated and serious illnesses and who are in need of specialist and complex care. Key considerations have been given to the design of the new children’s hospital around how to alleviate fear and anxiety for patients, how to maximise security and safety and how to reduce boredom, while creating an environment conjunctive to healing. This involves taking into account children’s sensory engagement and development, and how these interact with healing and learning processes. Sensory spaces, both indoors and outdoors, will help to achieve these design principles. Other key considerations include; providing appropriate acoustic environments, sensitivity around locating medical equipment that might cause fear in children, reducing environmental stresses such as noise, unpleasant smells or adverse temperatures and encouraging close relationships with nature. The new children’s hospital in its design, includes  4 acres dedicated to outdoor space, comprising 14 gardens and courtyards, for patients and families to enjoy.

Site-specific resources for autistic patients:

CHI at Connolly:

• Phlebotomy clinic : the OutPatients Department team recently ran a pilot for an autism-friendly  phlebotomy clinic. The pilot was a success and is now pending funding for establishing on a permanent basis.
• Social patient story: photos are taken with parents and children showing the patient journey through Outpatients Departments and UCC. This helps to relieve the stress around the ‘unknown’ elements of treatment and being in a new space.
• Internal screens: autism-friendly videos are played on internal screens at all times.

CHI at Temple Street:

• Multi Sensory Room
• Cubbie Sensory Pod: this is a small blank space where individuals can choose lighting, music and visual input. It is used as a therapy space rather than a treatment room and is located in the OutPatients Department. This Cubbie is often used for inpatients as it is always accessible for all children with sensory or regulation issues not just the autistic children**This Cubbie will be officially launched once restrictions regarding COVID-19 have eased.
• Pre-recordings of treatments: Recently the MRI Department created a video of the MRI experience to improve the experience of autistic children and young people.
• An Autism CNS was appointed within the mental health team, recognising the unique needs of autistic children who also have a mental health need.
  In the Eye clinic, Health Care Assistant Aidan developed a system using our person centred assessment, to identify reasonable adjustments for autistic children and those with learning difficulties.

CHI at Tallaght:

• Autism Awareness eLearning Programme available to all staff on HSEland.ie: The aim of this programme, for which staff from CHI at Tallaght provided content,  is to provide evidence based knowledge about autism for healthcare professionals interacting with children and adults with autism in the acute hospital setting.
• Sensory mats are used in Radiology and in the Emergency Department.
  CHI at Tallaght has two sensory rooms; one in their OutPatients Department and the other in their recently opened Emergency Care Unit . These rooms were developed specifically for children with autism and/or additional needs.

CHI at Crumlin:

• The Accessible Communication for Everyone (or ACE) group was established in CHI at Crumlin in 2017. It is a multi-disciplinary working group, which aims to improve access to all the different services and departments in the hospital for children and their families who have additional communication support needs. This includes autistic children and young people.
• In 2017, the ACE group completed a staff survey and received over 300 responses. This allowed the group to develop training and education sessions to better support the children and young people who access our hospital. This included a talk from Adam Harris, CEO of AsIAm, Ireland’s National Autism Charity, and seminars to give staff ideas around communication and sensory strategies.
• Help and advice given to departments which aims to improve information given to children and families e.g. through developing social patient stories about hospital procedures and what to expect when a child comes to hospital.
• Environmental changes: provide quiet spaces/rooms when possible.
• Sensory box of toys: provide single use sensory box of toys to patients who find trips to hospital a bit overwhelming. These items can help to make patients feel less anxious and uncomfortable about their hospital visit.

Orla Heaney, Autism CNS in CHI at Temple Street describes the understanding needed to move forward with universal design to promote an environment that supports neurodivergent children and young people, across CHI.

“In my role as Autism CNS, my knowledge and understanding in relation to Autism is changing and evolving. This reflects the changing landscape of understanding in relation to Autism. In recent times the views and perspectives of Autistic people are being reflected in research and this has led to a more in-depth and nuanced understanding of autism. Finally, the neurotypical outside in view is not the only one and we have an opportunity to hear about the lived experience of Autistic People including their strengths and supports that they need.”

“It is important we are involved in this campaign because levelling up our knowledge and understanding will help make CHI a safer and more inclusive environment for autistic children and young people who are trying to access healthcare.”