Engage Aotearoa

Category Archives: Recovery Stories

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!

The Royal Commission of Inquiry into Abuse in Care: Stories from survivor advocates and how to get involved

Right now, New Zealand is carrying out a Royal Commission of Inquiry into Abuse in Care. This is an opportunity for people who have experienced abuse as children, youth or vulnerable adults in the care of faith-based or state institutions between 1950 and 1999 to shine a light on what happened to them, so this can be formally acknowledged, learned from, and hopefully better prevented in future. This invitation extends to people who have experienced abuse themselves and their supporters. The scope of the inquiry is broad and the commission is interested in all kinds of abusive experiences across all kinds of state care settings including social welfare, education, corrections, disability, health and mental-health settings.

Please take a moment to check out the Abuse in Care website to find out more how to get involved. www.abuseincare.org.nz/survivors/how-to-get-involved/

Another good reason to visit the Abuse in Care website is for the short films where survivor advocates share their stories and their hopes for justice and change. Each video is just a few minutes long but you will meet some remarkable people with a lot of wisdom. If you are a survivor of abuse in NZ institutions, you might find a bit of hope in seeing these stories being given voice and being heard – do think about getting involved if it feels right for you. You can do this in person or in writing, in private or as part of a public commission hearing. Nonetheless, these are difficult experiences to revisit and retell. There are lots of ways to support this kaupapa if it doesn’t feel right for you to participate yourself: it is also a big help to spread the word and help raise awareness. This is something we can all do, whether we are survivors of abuse in care ourselves or want to be an ally to those who are. You never know who is carrying a story that is ready to be told.

The commission is interested in hearing about experiences of “physical, sexual, and emotional or psychological abuse, and neglect” including “inadequate or improper treatment or care” and abuse “by a person involved in the provision of State care or care by a faith-based institution.” The commission recognises that “a person may be ‘involved in’ the provision of care in various ways. They may be, for example, representatives, members, staff, associates, contractors, volunteers, service providers, or others. The inquiry may also consider abuse by another care recipient.” While the inquiry is specifically focused on historic experiences of abuse that took place from 1950 to 1999, they may consider experiences of abuse that took place before or after this period.

The commission defines state care as follows: “State care means the State assumed responsibility, whether directly or indirectly, for the care of the individual concerned”. This can be as a result of “a decision or action by a State official, a court order, or a voluntary or consent-based process including, for example, the acceptance of self-referrals or the referral of an individual into care by a parent, guardian, or other person” and “the State may have assumed responsibility ‘indirectly’ when it passed on its authority or care functions to another individual, entity, or service provider, whether by delegation, contract, licence, or in any other way.”

The inquiry can consider abuse “by entities and service providers, including private entities and service providers, whether they are formally incorporated or not and however they are described.” These may be residential or non-residential settings and may provide voluntary or non-voluntary care. For the purpose of the inquiry, ‘State Care’ includes the following settings:

  • Social welfare settings, including: (A) care and protection residences and youth justice residences: (B) child welfare and youth justice placements, including foster care and adoptions placements: (C) children’s homes, borstals, or similar facilities.
  • Health and disability settings, including: (A) psychiatric hospitals or facilities (including all places within these facilities): (B) residential or non-residential disability facilities (including all places within these facilities): (C) non-residential psychiatric or disability care: (D) health camps.
  • Educational settings, including: (A) early childhood educational facilities: (B) primary, intermediate, and secondary State schools, including boarding schools: (C) residential special schools and regional health schools: (D) teen parent units.
  • Transitional and law enforcement settings, including: (A) police cells: (B) police custody: (C) court cells: (D) abuse that occurs on the way to, between, or out of State care facilities or settings.

The inquiry may consider abuse occurring in any place within the above facilities or settings and in the context of care but outside a particular facility. For example, abuse of a person in care, which occurred outside the premises, by a person who was involved in the provision of care, another person, or another care recipient.

Here is that link again:
www.abuseincare.org.nz/survivors/how-to-get-involved/

Lessons for SSRI Withdrawal from a large online community of thousands

The special collection on discontinuing psychotropic medications at Therapeutic Advances in Psychopharmacology has delivered up another valuable addition to the evidence base on antidepressant withdrawal.

Adele Framer is the founder of an online peer support network called SurvivingAntidepressants.org. She’s gone through antidepressant withdrawal herself and has born witness to many other journeys through these experiences since the late 1990s. In this review, she shares what she has learned about antidepressant withdrawal from this vast online community.

Abstract: Although psychiatric drug withdrawal syndromes have been recognized since the 1950s – recent studies confirm antidepressant withdrawal syndrome incidence upwards of 40% – medical information about how to safely go off the drugs has been lacking. To fill this gap, over the last 25 years, patients have developed a robust Internet-based subculture of peer support for tapering off psychiatric drugs and recovering from withdrawal syndrome. This account from the founder of such an online community covers lessons learned from thousands of patients regarding common experiences with medical providers, identification of adverse drug reactions, risk factors for withdrawal, tapering techniques, withdrawal symptoms, protracted withdrawal syndrome, and strategies to cope with symptoms, in the context of the existing scientific literature.

Explaining more about Surviving Antidepressants, Framer writes, “The name SurvivingAntidepressants.org came about because I had read that, of all those taking psychiatric drugs (one in six United States (US) adults) 95% were taking antidepressants. However, drug combinations being so common among site members, we offer support for tapering all psychiatric drugs, including benzodiazepines. The staff is all volunteers, usually experienced community members who have demonstrated interest and ability. We are careful to make it clear we provide only peer support and do not diagnose, prescribe, or provide medical advice or psychotherapy. We encourage members to “pay it forward” and support other members. We do not proselytize for going off psychiatric drugs; we offer tapering information only to those who request it. Our suggestions, which are intended to be discussed with prescribers, are based on publicly available information, such as drug package inserts, governmental agency data, and journal articles.”

Describing the community members, Framer notes, “About 6000 pseudonymous members have self-reported longitudinal case histories, including drug and tapering history, symptom patterns, and reflections on emotional state, some extending over years. Many sought help beyond primary care and emergency rooms, seeing multiple psychiatrists, elite clinics, and specialists such as neurologists and endocrinologists. Given the self-selection factors, these narratives likely tend towards more severe cases. Although their lives may be complicated by drug withdrawal difficulties, the vast majority are average people who received average treatment from primary care providers, psychiatrists, and other specialists. So widely dispersed geographically, yet so remarkably consistent in theme, the experiences of these individuals are a powerful indicator of the gaps in clinical practice regarding the prescription of psychiatric drugs.”

Regarding the withdrawal syndrome itself, Framer explains, “Withdrawal symptoms are not inconsequential […] withdrawal symptoms are the unwinding of drug-induced neurophysiological adaptation. Symptomatic experience of adaptation, dependence, tolerance, or withdrawal is individual. […] Across psychotropics, physiological dependence is developed in 1–8weeks; following discontinuation, immediate or acute withdrawal similarly lasts 1–8weeks. Physiological dependence on SSRIs has been found to occur in about 4weeks, risk of antidepressant withdrawal syndrome increasing after the same period. Antidepressant withdrawal symptoms have long been held to last a few weeks, which may represent only acute withdrawal while the drug’s target receptor at least partially re-adapts. However, across psychotropics, subsequent postacute withdrawal symptoms (PAWS, also known as protracted withdrawal syndrome or PWS), differing qualitatively from acute withdrawal, may last much longer, even years, indicating that further neurobiological re-adaptation occurs at individual rates, sometimes very slowly. PWS can be as debilitating and disabling as acute withdrawal symptoms. Our longitudinal case histories reveal that the arc of recovery from PWS is frustratingly halting and very gradual, with many setbacks, on a scale of 6months to years, much as
described in addiction medicine. […] After physiological dependence is established, withdrawal symptoms may occur following any reduction in dosage, during a taper, or after a drug switch, as well as discontinuation of the drug. The rate of drug tapering seems to influence the development of withdrawal symptoms throughout the taper and afterward, slower tapers probably allowing some neurological re-adaptation during the tapering process. We have found even mild withdrawal symptoms, which may indicate a lag in re-adaptation, may be compounded by subsequent reductions and become more difficult to reverse.”

Framer argues that close monitoring of the consequences of each reduction is important and notes that while it can be helpful to use mnemonics like “FINISH [flu-like symptoms, insomnia, nausea, imbalance, sensory disturbances, and hyperarousal (anxiety/agitation)]” it is important to keep in mind that these aids do not “capture the universe of PWS symptoms”. Because individual responses differ, it is important to pay attention to each individual’s specific experiences.

All of this seems remarkably consistent with the evidence on antipsychotic withdrawal. If you are wanting to learn more about the mechanisms of withdrawal, the experiences involved in antidepressant withdrawal, and the strategies that appear to help, definitely check this paper out.

Read the full text here (it’s free): What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Adele Framer, 2021, Therapeutic Advances in Psychopharmacology, 11, DOI: 10.1177/2045125321991274

New study highlights stories of successful withdrawal

My latest paper has just been published in the open access journal, Therapeutic Advances in Psychopharmacology, as part of their special collection on discontinuing psychotropic medication.

You can read the full text free here: Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication (Larsen-Barr and Seymour, 2021).

Abstract

Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this.

Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process.

Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences.

Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.

Lindah Lepou’s powerful story of survival

Lindah Lepou is a Samoan transwoman, fashion designer, artist, and performer who recently shared her story in the form of a long prose poem called Blah Blah Blah, as part of the Pacific Arts Legacy Project from Pantograph Punch and Creative NZ.

This is an intense but powerful story that takes you on Lindah’s journey through growing up trans in NZ and Samoa, navigating stigma and discrimination, surviving physical and sexual violence, dealing with suicidal urges, and discovering her identity and personal power.

Lindah opens her story with an acknowledgement to ‘Le Va’. I love this concept. It’s like an ancient, indigenous predecessor to social constructionism and family systems thinking.

Jemaima Tiatia-Seath defines Le Va as “the relational space that connects people, things and elements. The sacred space between, the space that binds independent entities together, the space that is context, the space that gives meaning to things. A space not solely observed by the individual but also executed at wider institutional and societal levels. Pacific peoples inhabit multiple social spaces, hold various roles, responsibilities and standing within their families, villages, churches and communities, occupy a range of experiences, by age, socioeconomic position, gender identity, sexual preference, birthplace, ethnicity, disability, and religious/spiritual affiliation. Genuine Pacific cultural competency embraces and values all diversity. (See: Tiatia-Seath, 2018, The importance of Pacific cultural competency in healthcare, Pacific Health Dialog; 21/1: 8-9.) That can start to sound a bit academic sometimes, but when you read a story like Lindah’s, or any recovery story really, the many intersections come to life.

Lindah writes, “Ona muamua Le VA. Blah blah blah blah blah… Soso‘o mai loa AITU. Blah blah blah blah blah… GAFA Sāmoa and Pālagi lineage. A family of multidimensional artists. Blah blah blah blah blah… Solo Sāmoan mother and absent Pālagi father. Blah blah blah blah blah… I was born in Wellington, New Zealand (1973). Blah blah blah blah blah… Transgender. I was an effeminate child named ‘Aaron Lepou’. Blah blah blah blah blah…”

Later, she continues, “Blah blah blah blah blah… I create ‘Lindah Lepou’ with all the courage and qualities I urgently need. I wanted to kill myself. Blah blah blah blah blah… Performing Artist. I started dancing to express myself and build self-confidence. Janet Jackson and En Vogue were my obsession. Blah blah blah blah blah…”

Read the rest of Lindah Lepou’s story on Pantograph Punch here.

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.

Clinicians share their lived experience: In Conversation episodes 1-5

The In Conversation Series from In2GreatMentalHealth invites mental health professionals to share their lived experience to help reduce the stigma associated with mental-health difficulties in our communities and within the mental-health workforce.

Scroll down for episodes 1-5.
I’ve gathered together episodes 6-11 for you here.
Watch the full series on In2Gr8’s Youtube channel here.

Episode One: Clinical psychologists Dr Natalie Kemp and Dr Anna Sicilia introduce the series and talk about their lived experience and stigma in the mental heath scene.

Episode Two: Professor Patrick Corrigan in conversation with Dr Natalie Kemp about his lived experience and how things have shifted over the years.

Episode Three: Clinical psychologist Dr Nneamaka Ekebuisi talks about their lived experience of mental health difficulties and intersectional issues.

Episode Four: Mental health nurse Kate Snewin speaks about her lived experience of mental health difficulties and the impact of work culture on navigating this.

Episode Five: Dr Thomas Richardson talking to Dr Natalie Kemp about his experience of navigating lived experience of bipolar disorder as a clinical psychologist.


Clinicians share their lived experience: In Conversation episodes 6 – 11

In Conversation is a series of interviews with mental-health clinicians who have their own lived experience of struggling with their mental health from In2Gr8 Mental Health in the UK. The first five episodes feature Dr Natalie Kemp in conversation with Dr Anna Sicilia, Professor Patick Corrigan (clin psych), Dr Nneamaka Ekebuisi (clin psych), Kate Snewin (RMN), and Dr Thomas Richardson (clin psych).

Scroll down for episodes 6-11.

Episode Six: Dr Stephen Linacre, clinical psychologist, talks about his lived experience of significant eating difficulties and the professional work he does now in this area.

Episode Seven: Dr Inke Schreiber, clinical psychologist talks with Natalie Kemp about her lived experience of mental health difficulties.


Episode eight: Dr Rufus May, clinical psychologist talks about his lived experience of mental health difficulties and working in the mental-health sector.

Episode Nine: Michelle Jamieson, PhD candidate, speaks about her lived experience of mental health difficulties and issues of intersectionality.

Episode Ten: Professor Jamie Hacker-Hughes talks about his lived experience of the diagnosis of bipolar disorder, and working for many years professionally in the mental health scene.

Episode Eleven: Emily-May Barlow, Mental Health Nurse and academic, talks about her lived experience of mental health difficulties, in particular, of dissociation.

Highlights from Engage on Facebook

We Can’t Keep Treating Anxiety From Complex Trauma the Same Way We Treat Generalized Anxiety: Vicki Peterson writes “I’ve been living with the effects of complex trauma for a long time, but for many years, I didn’t know what it was. […] For those who have experienced trauma, anxiety comes from an automatic physiological response to what has actuallyalready happened. The brain and body have already lived through “worst case scenario” situations, know what it feels like and are hell-bent on never going back there again. The fight/flight/ freeze response goes into overdrive. It’s like living with a fire alarm that goes off at random intervals 24 hours a day. It is extremely difficult for the rational brain to be convinced “that won’t happen,” because it already knows that it has happened, and it was horrific.” Read more here.

Man Lessons – How to make a documentary about transitioning: “Over six years, Ben Sarten filmed Adam Rohe (who was assigned female at birth) on his journey into manhood, forming a friendship that to them has become as important as the documentary itself.” Read more here.

I was diagnosed with acute psychosis at 19. Here’s what came next:Kris Herbert reflects on her tumultuous mental health journey to share what she’s learnt along the way. She writes,”Our mental wellbeing is not fixed. It’s a shifting continuum and at the edges, we each have our limits. We all also have access to tools like exercise and meditation, good food and, hopefully, someone to talk to.” Read more here.

Researchers Find Lack of Evidence, Call for Halt to ECT: “A new review, published in Ethical Human Psychology and Psychiatry, re-assesses studies that compare electroconvulsive therapy (ECT) with placebo treatment for depression. The analysis also assesses the only five available meta-analyses that claim that ECT is effective.” In a press release, John Read, the lead author says “This body of research is of the lowest quality of any I have seen in my 40-year career.” Read more here. In related news, dozens of people have sued the NHS after experiencing a slew of serious adverse effects that they were not informed of before they consented to ECT procedures.

Inside Internal Family Systems Therapy: In this article, Ben Blum gives a detailed description of Internal Family Systems Therapy (IFS), including both clinician and service-user perspectives. Blum writes,”IFS therapy is upending the thinking around schizophrenia, depression, OCD, and more. […] In IFS, mental health symptoms like anxiety, depression, paranoia, and even psychosis were regarded not as impassive biochemical phenomena but as emotional events under the control of unconscious “parts” of the patient — which they could learn to interact with directly.” Read more here.

Find more on the Engage Facebook page.
www.facebook.com/engageaotearoa/

New issue of the Journal of Contemporary Narrative Therapy out now

The latest issue of the Journal of Contemporary Narrative Therapy is online now, free for anyone to read and full of great reflections like this quote from Rebecca Solnit…

“What’s your story about? It’s all in the telling. Stories are compasses and architecture; we navigate by them, we build our sanctuaries and our prisons out of them, and to be without a story is to be lost in the vastness of a world that spreads in all directions like arctic tundra or sea ice…We tell ourselves stories that save us and stories that are the quicksand in which we thrash and the well in which we drown… We think we tell stories, but stories often tell us … The task of learning to be free requires learning to hear them, to question them, to pause and hear silence, to name them and then to become the storyteller.”

Find the latest issue and an archive of past issues here.

Editors: Tom Stone Carlson, Sanni Paljakka, marcela polanco, and David Epston