Engage Aotearoa

Category Archives: Families/whanau

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.

An illustrated guide to the positive childhood experiences that build resilience

Many people are familiar with the research showing that Adverse Childhood Experiences (ACEs) are strongly predictive of later experiences of mental-health challenges and a whole host of other poor outcomes. But what about the experiences that strengthen our resilience?

A 2019 study looked at the childhood experiences involved in building resilience and experiences of wellbeing. They identified seven childhood experiences shared by resilient adults. Artist and therapist Lindsay Braman has illustrated the key findings so they’re super easy to read and share.

Of course if you missed out on these experiences in childhood, there’s still plenty you can do to build your resilience later. Humans are just so resourceful and creative, it’s amazing how many ways we can find strength.

Read more about the 7 Positive Childhood Experience associated with resilient adults here.

New Research: Support makes a difference in antipsychotic medication withdrawal

An important part of my doctoral research and some further analysis has just been published in Social Psychiatry and Psychiatric Epidemiology. You can follow this link to view a copy of the full text online, but will need a subscription to download a pdf copy to keep:  https://rdcu.be/MpKs

Here’s a screenshot of the abstract for quick reference…

Abstract Attempting to Stop Antipsychotic Medication Success Supports and Efforts to Cope

Engage Consideration: Dutch initiative challenges mainstream thinking about psychosis

This post highlights a relatively new Dutch initiative that works to promote a helpful way of thinking about experiences of psychosis. The team at Engage Aotearoa recently stumbled across it on Facebook and thought it was full of information others might like to consider – either in their own recovery or in their efforts to support others seeking recovery.

Jim van Os and others have created a website, manifesto and set of audio-visual ‘explanimations’ to help people understand psychotic experiences in a way that allows for meaning-making and hope for recovery.

Much of the website is in Dutch, but an English-language version of the core resources on the “Schizophrenia Doesn’t Exist” website is available. It’s a provocative title, but the project creators do not mean to say that extreme experiences like hallucinations and delusions do not exist.

If you are not much for reading, you can watch Jim van Os’s TED Talk and get it all in a 15-minute nutshell or explore the 2-minute ‘explanimations‘ about psychosis and recovery on the website.

Visit the Schizophrenia Doesn’t Exist English-language webpage to find everything in one place. 

The Manifesto outlines “14 Principles for Good Care of Psychosis”. The first 7 principles address current thinking that frames psychosis as a brain disorder called schizophrenia and set out evidence for an alternative – Psychosis Spectrum Syndrome or PSS. The final 7 principles set out a vision for recovery-based practice, these state…

“8: To recover from PSS, a person must be offered hope and perspective from the very first moment. Recovery is a psychological process. It is a process of learning to adapt and develop a new perspective. With support from people with lived experience of psychosis and, where necessary, from doctors and therapists who support the process of recovery.

9: Every person with PSS should have access to a person with lived experience of psychosis from the earliest phase of treatment. A person with lived experience is in a unique position to offer perspective and hope (‘I was able to recover as well’).

10: The primary goal of treatment is return to the person’s environment, education and/or work. Education and work are prerequisites for recovery: even if residual symptoms remain, people can start picking up where they left off. The practice to wait for full recovery is counterproductive.

11: Anyone who enters the mental health system with PSS should be encouraged to talk about their psychosis. The content of the psychosis should be seen as meaningful, and may represent the key to underlying issues.

12: Psycho-education should not introduce an unproven biomedical model of brain disease as a central theme.

13: Anyone who suffers from psychosis should have access to psychotherapy by an experienced therapist.

14: Antipsychotics may be necessary to reduce psychosis but do not correct an underlying biological abnormality. Antipsychotics are no cure. Much more attention is required for individual dose optimisation to reach the lowest possible dose and to avoid irrational polypharmacy.

Schizophrenia does not exist, which is a good thing.
Because much can be done about PSS.”

~ Quoted from, Manifesto: 14 Principles for Good Care of Psychosis. Schizophrenia Does Not Exist website, 12 July 2015.

 

 

Free Primary Healthcare for Kiwi Kids from 1 July 2015

FreeDocsforKids

To find out more

Ask your GP or nurse

Talk to your pharmacist

Call Healthline on 0800 611 116

Visit www.health.govt.nz/visiting-a-doctor

 

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

New Ministry of Health guidelines for COPMIA

The Ministry of Health will soon release the national COPMIA guideline, currently in draft.

This guideline will outline the responsibilities all mental health and addiction services have to the children of parents with mental illness and or addiction (COPMIA) and their families and whānau. For some, this is going to mean a big shift in the way that services operate. The guideline envisions a mental health and addiction sector that is inclusive of family and whānau, focusses on strengths, and promotes and protects the wellbeing and rights of children. It promotes early intervention in the lives of children to support resilience, offering evidenced based and culturally appropriate ways of working, and across sector partnerships to meet the needs of children and their families and whānau.

For more information click on this link to Te Pou.

Or contact Mark Smith at Te Pou
Phone number: 07 857 1278
Mobile number: 027 687 7127

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.

 

 

IIMHL New Zealand Special Update

The following links are a summary of the IIMHL AND IIDL UPDATE – 15 NOVEMBER 2014

If you want further information on the IIMHL organisation go here. To sign up for their mailing list go here.

For general enquiries about these links or for other IIMHL information please contact Erin Geaney at erin@iimhl.com.

  1. The Physical Health of People with a Serious Mental Illness and/or Addiction: An evidence review
  2. Stories of Success
  3. Tihei Mauri Ora: Supporting whānau through suicidal distress
  4. New ‘wellbeing bank’ for baby boomers
  5. “There is always someone worse off…” (regarding the earthquakes in Christchurch)
  6. Debriefing following seclusion and restraint: A summary of relevant literature
  7. Families and whānau status report 2014: Towards measuring the wellbeing of families and whānau
  8. Growing Up in New Zealand: Vulnerability Report 1: Exploring the Definition of Vulnerability for Children in their First 1000 Days (July 2014)
  9. Parents or caregivers of children with a disability have a voice in New Zealand (video playlist)

Also recommended in the update are:

Effective parenting programmes: A review of the effectiveness of parenting programmes for parents of vulnerable children
(2014, April 14). Wellington: Families Commission

New Zealand practice guidelines for opioid substitution treatment
(2014, April). Wellington: Ministry of Health