Engage Aotearoa

Category Archives: Disability Issues

Navigating autism as a couple: the university journey

Cameron is a kiwi guy who was diagnosed with autism in adulthood. He and his wife Kirsten write regular blogs about their life navigating autism as a couple. Their blog lets you follow their journey from seeking out a diagnosis, making sense of it, and working through the challenges autism presents. One of the things I love about this blog is that we get to hear from both Cameron and Kirsten as they welcome us into their struggles and small victories. In their latest blog post, they celebrate Cameron receiving his university diplomas and reflect on all it has taken to get there (this involves a bit of swearing, which is not surprising given the challenges he faced).

For me, these experiences really highlight the importance of accurate diagnosis and access to appropriate accommodations within our education settings. If you are autistic or experience other forms of neurodiversity like ADHD, and you are studying or preparing to study, it is vital that you know you can find support for your learning from your university’s disability office. All educational settings are required to have some form of support in place and you have a human right to ‘reasonable accommodations’ to ensure you can take part to the best of your ability.

Cameron didn’t have a diagnosis at the time he was studying, and describes just how distressing the process of misdiagnosis ultimately was for him. You could argue that it was the stress of misdiagnosis that prevented him from completing the degree he had initially planned for himself, rather than the challenges of autism itself. Because of course, if we don’t know what it is really happening to us, it’s incredibly difficult to know what we need and what is going to help. And there are plenty of things that can help. It is possible to plan a reduced course load, more time to get course-work done, reader-writers for note-taking, exams and tests, assistance in labs, support to educate your teachers, and all sorts of other things to help make it easier to manage the challenges you face and successfully pursue further education without placing yourself under undue levels of stress and distress. Sometimes it takes an advocate or two to access these accommodations and Kirsten gives us an inspiring example of the difference it can make when people have someone to stand beside them in this way.

Follow Cameron and Kirsten at Help My Husband Has Asperger’s and read their latest post here My Train Finally Arrived at Alumni Station!

Alyssa’s Autism Acceptance Project

I recently discovered Alyssa’s Autism Acceptance Project online in a blog post by the project creator herself, Alyssa Bolger and her brother Lachlan, two teenagers on the autism spectrum on a mission to change their little corner of the world for the better. They are based in Australia but I found their story really inspiring and think you will too. I love solutions created by the people they are designed to serve. Insider knowledge is a special thing and it always seems a bit like finding treasure when I come across something like this. As a clinician, research is one thing, but it’s never quite as powerful as knowing real life examples of people doing well and what it’s been like for them. There’s a term for this, ‘the power of positive contact’ and it’s a key ingredient for creating accepting communities. This project has that in spades. You can find Alyssa’s Autism Acceptance Project and follow her family’s journey on Facebook at www.facebook.com/TheAAAProject/

Alyssa and Lachlan’s article on Reframing Autism gives us a real life example that totally busts the common myth that people on the autism spectrum aren’t interested in friendship and shines the light on the barriers that get in the way. All humans need friendship including people on the autism spectrum.

Alyssa and Lachlan write, “My name is Alyssa, and my younger brother is called Lachlan. We are both proud autistic teenagers and we are writing this post together (with a little help from our autistic parents), because we want everyone to know how important friendship is to us, as we know there are Neurotypicals out there who think autistic people don’t care about having friends.”

They go on to explain, “Lachlan and I have learned that making friends is all about having something in common. That’s why we started our Lego club called BrickTime a few years ago. It’s a safe place that’s seen lots of friendships, because of a common love of Lego. Some of the Lego builds have been amazing! We were even going to organise an exhibition to show off these builds, but COVID-19 put a stop to that. Hopefully, we’ll get to do it one day.

Along with BrickTime, the other thing we do as the AAA Project is travel to schools to talk to kids about autism. We started doing this because of a message that I received while I was the Telethon kid back in 2015. A young autistic girl (who was so happy to discover that she wasn’t the only autistic girl through seeing me on TV) sent a message to ask if I would be her friend. She said she didn’t have any friends in her small country town, because nobody ‘got her’. I would have loved to have been her friend but, unfortunately, I had no contact details for her (and I didn’t even know her name). So, we set off travelling around WA, in the hope that we might find her. We talked to kids from schools as far south as Albany and as far north as Kununurra. Lachlan and Dad did all the behind-the-scenes tech stuff, and Mum and I did the presentation.”

Read the full story here: Building Friendships Brick by Brick, by Alyssa and Lachlan Bolger on the Reframing Autism website.

Te Pou: Towards restraint-free mental health practice

Te Pou is pleased to launch Towards restraint free mental health practice: Supporting the reduction and prevention of personal restraint in mental health inpatient settings. This resource is the latest in a suite of work aimed at reducing and preventing the use of seclusion and restraint. Services can use this resource to plan and identify best practices that support a least restrictive approach to service delivery.

Contact:
Te Pou
Level 2, Building B, 8 Nugent Street, Grafton, Auckland 1023.
Telephone: +64 9 373 2125www.tepou.org.nz

Reprints of popular Mental Health Commision resources now available

Due to popular demand, new versions of “Oranga Ngākau – Getting the most out of Mental Health and Addiction Services: A recovery resource for service users” and “When someone you care about has a mental health or addiction issue” are available in hard copy or by download.

“Oranga Ngākau” is easy to understand and provides valuable information about what to expect from treatment in mental health and addiction services. This includes a glossary of terms used during care, as well as describing different possible scenarios when using these services for the first time.

“When someone you care about has a mental health or addiction issue” is a resource for those who are supporting others. Read about the best ways for family, whānau and friends to help people close to them who are in care, as well as how to find support for themselves, should they need it.

Contact:
Kim Higginson, Information Officer, Mental Health Foundation
info@mentalhealth.org.nz

Synergia Report -Think Differently, Ministry of Social Development

Think Differently, led by the Ministry of Social Development, is a social change campaign that seeks to encourage and support a fundamental shift in attitudes and behaviours towards disabled people.

It works across community and national level activities to mobilise personal and community action, to change social attitudes and beliefs that lead to disabled people being excluded, and to increase people’s knowledge and understanding of disability and the benefits of inclusive communities. To support this work, Think Differently commissioned a review of the published and grey literature to understand the factors that cause disabled people to be socially excluded. The review is designed to inform the further development of the Think Differently Campaign. This summary focuses on understanding social exclusion and its key drivers. The methods and a more detailed analysis of the key concepts are provided in the main body of this report.

 

 

Dr Gwyn Lewis: a modern understanding of arthritis

18th April University of Auckland, 10.00 – 11.00

Presenter Dr Gwyn Lewis:  Gwyn’s presentation will focus on a modern understanding of arthritis related pain, avoiding pain pitfalls and future directions in the treatment of arthritis related pain.

Associate Professor Gwyn Lewis is a neurophysiologist based at AUT University’s North Shore Campus in Auckland. She obtained a PhD in motor control from the University of Auckland in 2003. Gwyn had an extended post-doctoral experience undertaking research in motor control, rehabilitation and neurophysiology at the Rehabilitation Institute of Chicago. She currently spends half her time teaching in AUT’s physiotherapy programme and the other half undertaking pain research in the Health and Rehabilitation Research Institute. Most of her research is in pain neurophysiology and how it relates to persistent pain development, pain modulation pathways, and the cognitive factors and psychosocial influences affecting pain.

Contact: Carol Lovatt, Northern Regional Administrator, Arthritis New Zealand, Kaiponapona Aotearoa
Ph: 09 523 8900
Email:  carol.lovatt@arthritis.org.nz
Support the person in your family who has arthritis.
Phone 0900 33320 OR Donate via our website www.arthritis.org.nz

Canterbury Mental Health Directory and Guide

Engage Aotearoa recommends the Canterbury Mental Health Directory as a great place to start if you would like to seek help with an emotional, relational or mental health issue. It lists a number of support groups in Canterbury.

If you are asking yourself questions like these: “What sort of help do I need? Who should I go to? What will it cost? How private will it be? Will I have to wait?” this directory attempts to answer these and other questions in understandable language and with your best interests at heart. The directory can be found here. (Note from Engage: You could also try out our Community Resources Directory, which has some South Island entries.)

The website also features a superb guide for starting out seeking help, found here.

IIDL Features: The Power of Visual Stories

Carmen Norris, MA of the Department of Anthropology, University of Alberta, writes:

“What power do stories hold and what can they do for society? What value do images bring to stories and what can visual storytelling do for a project interested in improving community engagement for people with developmental disabilities and challenging social perception of disability in our community?”

View this article here.

Project Citizenship is a pioneering initiative that aims at helping people with disabilities be seen and included in our communities as full contributing citizens.

Tackling Mental Health Problems among People with an Intellectual Disability

The website MedicalExpress.com has released news from the University of New South Wales that a new resource is being launched to tackle mental health problems among people with an intellectual disability and to improve the system that is currently failing them.

The Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers (otherwise known as The Guide) has been developed by UNSW researchers and will provide a national framework for action for all frontline mental health service professionals. It is being launched at the Royal Australian and New Zealand College of Psychiatrists 2014 Congress in Perth.

More information here.

 

Chinese Community Asked to Reconsider Disability

Chinese Parents Support Service Trust (CPSST) is embarking a journey to ask the Chinese community to Think Differently about disability.

“The unlimited love” is the title of the campaign to change attitudes and behaviour that limit opportunities for disabled Chinese people in Auckland. The campaign is funded through the Ministry of Social Development, Social Campaigns Team Family and Community Services.

The campaign will utilise Chinese media, such as Chinese Voice Radio AM936, Skykiwi (most popular Chinese website in New Zealand) and Chinese Herald (newspaper) to introduce a series of local and national disability services. These include, Autism NZ Inc, Blind Foundation, Deaf Radio, Circability, Elevate Christian Disability Trust, Mental Health Foundation’s Kai Xin Xing Dong project, Independent Living Services and many more. Beside that, Philip Patston and Dr. Huhana Hickey also shared their inspiration about their work in the disability sector.

Eva the CEO of CPSST hopes by introducing disability services Chinese people can gain an understanding of the services available for them. “ We hope more dialogue among Chinese community about disability by introducing the disability services”.

According to The New Zealand Disability Strategy One in five people, in New Zealand report having a long-term impairment. This can be born, incidents, health issues or require later in life.

(The Unlimited Love has been running on every Saturday for 13 weeks on AM 936 from 10am to 11am).

http://cpsst.org.nz/