Altogether Autism Journal, Issue 3 2016

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Depression in autistic adults Learning to surf Peer support works PLUS: Win a book

Autism, mental health and wellbeing In this issue of the Journal, we shine a light on mental health and autism. Congratulations to Jeanette Purkis, Dr Emma Goodall and Dr Jane Nugent on the recent publication of their new book The Guide to Good Mental Health on the Autism Spectrum. We are giving away a copy of this book (see page 3 on how to enter the draw). Altogether Autism is a free, nationwide autism information and advisory service provided as a partnership between Life Unlimited and Parent to Parent New Zealand. With the vast amount of material available online, finding credible information on autism can be a challenge. Altogether Autism provides tailor-made, relevant, evidence-based information, individually researched and collated by our information officers and researchers. Our team has the skills and experience to provide resources from verified sources including our Consumer Reference Group – people on the spectrum and family members of people with autism. We also refer enquiries to our Professional Experts Group – specialists from a range of professions with clinical expertise in autism. Whether you are on the autism spectrum or you are family/whānau or a professional supporting an autistic person, our service is free. Contact us at any one of the following links:


We also congratulate Martyn Matthews on his relevant and timely PhD which will be conferred in December. His research considered psychiatric conditions that co-occur with autism, and examined treatment and supports for adults with autism. His article on pages 16-19, ‘Depression in adults with autism’, draws from this doctoral research. This edition also outlines the purpose and process of the Ministry of Health’s ASD Panel, established to help mental health and disability services work together effectively (see ‘Working across disability support services and mental health services: Collaborating for better outcomes’, by Amanda Bleckmann on pages 12 and 13). New research from Sweden shows the average age of death for people with autism is 54 years. Matt Frost spoke eloquently and provocatively at the Te Pou Disability Leadership Sector Event in July, challenging us to consider why he should bother contributing to Kiwisaver if he will be dead by age 54. While this case-control study does not predict outcomes for individuals, it does show differences between two groups of people - 27,000 with autism and 2.7 million without. The researchers, led by Tatja Hirvikoski, are the first to confirm what previous research has hinted: that across all groups, people with autism were 2.5 times more likely to have died during the study period of 1987-2009 than those without autism. The average age of death for people on the spectrum was 53.87 years old, compared with 70.2 years for those without autism. There is nothing inherent in autism that is known to cause early death, so what was behind these premature deaths?

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Epilepsy and suicide were two causes that stood out. Those most at risk of death by suicide were women with autism and average/ above average intelligence. These women were 10 times more likely to die by suicide than those without autism.

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Why should this be? The researchers suggest that people with autism may not only be more at risk of depression but may also be less likely to be diagnosed. Social and communication difficulties may create barriers in both accessing services and discussing mental health needs.

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Two actions coming out of the study were a revision of a Swedish clinic’s guidelines for managing depression and suicidal thoughts among people with autism, and a recommendation for further autism-specific training for health professionals. Altogether Autism has developed PRISM which includes workshops for mental health professionals: contact us for more information. Catherine Trezona National Manager, Altogether Autism



Where to get help Lifeline (open 24/7) - 0800 543 354 Depression Helpline (open 24/7) - 0800 111 757

free phone 0800 273 463


Healthline (open 24/7) - 0800 611 116 Suicide Crisis Helpline (open 24/7) - 0508 828 865 (0508 TAUTOKO). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.


Keynote conference speaker confirmed By Jenny Gibbs Rita Jordan, a professor in Autism Studies at Birmingham University, has been confirmed as the first of the keynote speakers for next year’s Altogether Autism conference in Auckland on July 19 and 20. Earlier this year I had the pleasure of attending a one-day Compass seminar where Dr Jordan spoke on Happiness and Autism; Supporting Children and Young People with Autism Spectrum Disorder and Their Families towards a Happy Life. Her message was that autism is not in itself disabling; that autism becomes a disability in a society that does not tolerate difference. Because of this view of autism as something to be “fixed”, interventions have generally focused on normalising the autism symptoms, as if the only way to be accepted is to be non-autistic. This strive to be “normal” creates great stress for children and families and is fundamentally devaluing of adults on the spectrum Dr Jordan has a wealth of knowledge of education of children and adolescents with special needs and autism.

In this issue


Autism and mental health conditions in young people


Fitting the mould


Learning to surf


Using the Māori creation story

After completing a degree in Psychology, she became a teacher in nursery and primary mainstream schools and started an opportunity group and toy library for children with special needs. She took a Masters in Child Development and researched curriculum development and parent training for children with complex needs and then worked as a teacher in schools for children with severe learning difficulties, and then children with autistic spectrum disorders, for nine years.


She has written and researched on many aspects of autism and has lectured and been involved in consultancy nationally and internationally and in 2007 received an OBE for her services to special needs education.


Collaborating for better outcomes


What do mental health services see?

I would strongly encourage anyone who has the opportunity to hear her speak to make the effort.


Peer support, a framework for a good life


Go in the draw to win a copy of The Guide to Good Mental Health on the Autism Spectrum. Simply send your name and address to before 31 October for your chance to win. Find out more about The Guide to Good Mental Health on the Autism Spectrum on page 15 Cover photo: You can’t stop the waves, but you can learn to surf. One Shot Image © Copyright 2007-2016 Altogether Autism. ISSN 2463-3712 (Print) ISSN 2463-3720 (Online)


New guide for the journey to mental wellness

Depression in adults with autism

Welcome to the latest edition of Altogether Autism Journal and we have a fascinating mix of new research, first person accounts and industry comments. Thanks to your feedback, we will add a Letters to the Editor section to both our Journal and to our website Your contributions are valuable to us so we encourage you to send your letters, comments and articles to Editor: Mary Anne Gill, Life Unlimited

All rights reserved. Disclaimer: The views and opinions expressed in the articles written and submitted for this publication are those of the authors and do not necessarily reflect the views or opinions of Altogether Autism.



Widening the lens

Autism and mental health conditions in young people Children and young people with Autism Spectrum Disorder are more likely than the general population to experience mental health problems but how do we separate out what behaviours or challenges are ‘autism’ and what is a ‘mood disorder’ or ’behaviour disorder’? Jenny Gibbs, Clinical Psychologist and Altogether Autism Professional Expert Group member, looks at some of the mental health issues commonly experienced by young people on the autism spectrum and gives some advice on how to help prevent or improve these conditions

Diagnosis overlap The diagnosis of ASD¹ is challenging because autism is complex; there is a high degree of symptom overlap with other neurodevelopmental and mental health conditions and all these conditions are in a continuum with the normal range. At the point of diagnosis, a clinician will be thinking “Is this autism? If this is not autism, what is it?” (This is called differential diagnosis). “If it is autism, is there anything else going on?” (This is called looking for comorbidities). “Or is this a little bit of everything but not enough of any one thing to call it something?” It can be challenging at times to know what we are looking at.

may see the mental health issues, but not necessarily see the symptoms within a developmental framework, while a clinician in a developmental service may be confident in describing the neurodevelopmental condition but less comfortable with diagnosing the comorbid mental health conditions that may accompany it. This is one of the reasons that people with similar presentations may end up with a different diagnosis depending on whom they see. It is also why there is a need for clinicians who work in this field to have training in both areas. Clinicians are generally in agreement that it is important to make the discrimination between the symptoms of autism and any mental health comorbidities because it may change our approach to treatment.

Is something else going on? There is overwhelming evidence that children and young people with autism are more likely than the general population to experience difficulties that are generally considered under the mental health umbrella (Mannion et al, 2014). At the point of diagnosis and at any time post-diagnosis behaviours may be noticed that make parents, teachers and professionals wonder if ‘something else’ is going on. The reason for the higher rate of mental health conditions is not fully understood, however we now know that autism shares a common genetic basis with these mental health conditions.

Common mental health conditions in young people with autism Autism is a complex developmental condition that presents in different ways at different ages and varies depending on other factors such as language ability, intellectual ability and underlying temperament as well as the environment the child grows up in and whether they have received early intervention. Symptom overlap adds to the complexity. For example, how can we discriminate between the rituals and obsessions of autism and the compulsions of Obsessive Compulsive Disorder (OCD); an eating disorder from the restricted and fussy eating in autism; the flat affect of schizophrenia with the lack of communicative facial expression in autism? To add to the complexities, how symptoms are viewed can be coloured by the lens through which the clinician views the child or young person. A clinician based in a mental health service

The mental health conditions seen most commonly in children and adolescents with autism are the ‘mood disorders’ – anxiety and depression and the ‘behaviour disorders’- Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD). In addition a small percentage of children with autism may develop more serious mental health conditions, such as psychosis.

Anxiety Many people with autism also have an anxiety disorder. Anxiety is of course a normal human experience; however people with autism may have more difficulties than neurotypicals at controlling anxiety once it is triggered. Adolescence is often the time that anxiety may become troublesome; this is the time that the young person is not only aware that they may not be fitting in but may also find it more difficult to communicate their feelings.

¹In this article, we have used ‘autism’ instead of ‘ASD’ as autism is the preferred term of our autistic community, however, the formal diagnostic term is ‘Autism Spectrum Disorder’, abbreviated to ‘ASD’.



Depression Depression is more common in adolescents than children; it can be difficult to identify in young people who are unable to identify and label their emotional states. One of the signs of depression may be the onset of neglect in self-cares, including hygiene.

Obsessive Compulsive Disorder The rituals, routines and repetitive behaviours that are core symptoms of autism can be mistaken for OCD. The difference is that in OCD, obsessional and intrusive thoughts cause distressing anxiety and compulsive behaviours/ rituals reduce that anxiety. In autism, the repetitive behaviours are not distressing and may be pleasurable. Nonetheless adolescents with autism do develop OCD symptoms at greater rates than the rest of the population.

Attention Deficit Hyperactivity Disorder The rates of children and young people with autism who also meet diagnostic criteria for ADHD range from around 37% to 85% (Leitner, 2014). A recent study found that only 10% of children with comorbid ADHD symptoms were receiving stimulant medication despite best practice guidelines that suggest a trial of medication is justified when symptoms are severe.

Oppositional Defiant Disorder ODD is diagnosed when there is an ongoing pattern of disobedient, hostile and defiant behaviours. In addition there are difficulties with emotion regulation; the child cannot seem to control anger or frustration, even over minor triggers and may often react in violent or negative ways to their own feelings. ODD is thought by some to be a symptom associated with other mental health conditions such as ADHD and depression rather than being a mental health disorder in its own right.

Prevention Prevention of mental health difficulties is important. The same factors that are protective in the neurotypical population are protective in the autistic population. These include feeling loved and accepted and having a place to belong, having a healthy diet and exercise and enough sleep; having the vocabulary to understand, label and express emotions; having ways to relax and regroup; and being able to see the positives in life. Prevention that is more specific to autism involves families and young people learning about autism and how it uniquely affects them; the positive aspects of it and the challenges. The ability to identify and understand triggers for anxiety and then to find ways to minimise the impact of them is essential. If there are difficulties with communication, what will help? Similarly, adapting the environment to manage sensory challenges or unexpected change is important.

What to do if you suspect your child with autism is developing a mental health condition? Exclude physical causes first. Behaviour change can be caused by pain. A GP visit to look in ears and at teeth is a useful first step. If your child is verbal can they tell you what is troubling them? Think about environmental triggers. Has anything changed recently at home or at school? Has anyone else noticed any changes? Think about developmental changes. For example adolescence is a time of growing awareness of difference. Think about ways in which your child can develop peer relationships through their interests. If your child is at primary school, talk to their teacher. If they are at secondary school, the dean or school guidance counsellor can be a useful contact. They can have a useful perspective on what may be happening at school and how the child/young person is coping. Guidance counsellors have a lot of experience with troubled adolescents generally and often provide support for young people with social and emotional challenges and are knowledgeable about when to refer to mental health services. Your GP is also the person to talk with if you are concerned about a developing mental health condition. They can arrange referral to the right service. And if you are concerned that your child is at immediate risk of harming themselves or someone else, you can contact the crisis assessment team through your DHB or the police. You can also contact Altogether Autism for evidence-based information, contact details for any of these agencies, and strategies to support your child.

References Centres for Disease Control and Prevention. (2016). Attention Deficit/Hyperactivity Disorder. Retrieved from ncbddd/adhd/guidelines.html Leitner, Y. (2014). The co-occurrence of Autism and Attention Deficit Hyperactivity Disorder in children – What do we know? Frontiers in Human Neuroscience, 8, 268. Mannion, A., Brahm, M. & Leader, G. (2014). Comorbid psychopathology in Autism Spectrum Disorder. Review Journal of Autism and Developmental Disorders, 1(2), 124-134.

²Neurotypical is a term used to describe people who are not on the autism spectrum



Fitting the mould Reader, Do you know the pain of not fitting the mould, being the socially awkward one? Have you joined a sport or club you loved, then ditched it because you don’t get along with people? It sucks. Social awkwardness is feeling shy or uncomfortable when interacting with people outside your immediate family, often when in conversation with others, pushing it into a weird state that irritates others. Some socially awkward people try too hard to befriend a group and others are on their own walking up and down the hallway or sitting, sheltering in a corner because they struggle to keep up a conversation. The problem of social awkwardness is obvious, yet people ignore it. I wish to raise awareness as I have seen many people face it and know how it becomes a struggle on both sides.


friends never truly feeling like I had a presence. I felt like a ghost. Then one day he taught me to play chess and that year he convinced me to enter the whole school tournament, becoming top year two. Although there were only two-year twos it boosted my confidence, inspiring me to enter the next year’s tournament.

On one side we have people struggling to hold conversation with people, and people losing patience on the other as they get irritated or completely leave the person to themselves.

Then becoming the top year three chess player showed that I had potential. The next year I joined the school chess club, a thing I had wanted to try earlier but was too scared; being socially awkward. Years later, I had a community and the courage to face challenges. I had finally become a little less socially awkward.

Often thinking the person is bizarre, shaking their head as they walk past. The responder may also believe that social awkwardness is something people grow out of it but I know it can only improve, it never completely dissipates.

For people going through social awkwardness, I have some advice. I suggest following your passion and finding people that share it. Those people are often easier to talk to. Building on your talent and enjoyment improves confidence.

When I was younger I was more awkward than now, lacking confidence. I had one good friend but struggled with other

From The ghost in the hallway (aged 13).


Friends answer call for help For this young person with lived experience of autism and mental illness, the ocean is a useful metaphor that helps her communicate the impact of mental illness and her journey to wellness. I am autistic. While being on the spectrum comes with many challenges, my different way of thinking and being in our world has played a key part in my many successes. With a diagnosis came answers and an identity that brought a sense of belonging, within which I have found friendship. Mental illness is different. The challenges are many; the strengths and advantages are few. For me, there is no sense of pride in identity, and the self-stigma is huge. Anxiety has been a lifelong challenge, but more recently the appearance of “stupid” – the voice of a restrictive eating disorder, or anorexia – has plunged me into the experience of living with mental illness. In the last couple of days I came across a quote on Facebook: “You can’t stop the waves, but you can learn to surf.” I love the ocean and I think for this reason I drew meaning and strength from this quote. I described my analogy to a special friend who asked, “How did you get out there?” I’m not too sure of the answer, but this is my story. For some time I had been paddling at the water’s edge and into the shallows. Friends, and people who care for me, came to the beach to call me back when I had gone a little deep. But I was okay. I was in my depth. Occasionally the wave that came was a little bigger. I wobbled, but regained my balance and carried on. Then, there was a much bigger wave. I fell and went under. I couldn’t breathe. I came up and called out for help and they tried, but the current pulled me out into the ocean and far from shore. Out there it was calm and still, and for some time I floated, looking back to the shoreline. I was okay. I felt safe. After a little while though, I realised I needed to get back to my friends on the beach, but I didn’t know how. I called out and

asked for help. They answered, but I couldn’t hear what they said. I tried so hard to listen, but was too far out. The sea was no longer calm. The waves were small at first, but I no longer felt safe. I needed help, but I couldn’t reach it. A big wave (a referral to community mental health psychiatrist) pushed me under again. I came up beside a plank of wood (prescription for medication). From the beach they told me to hold on to it. I wasn’t sure at first, but I trusted them. It kept me afloat and I was able to rest just a little. I wanted to get back to the beach, but I was tired. The waves continued as I started to look at some of the “hard” stuff that had drawn me out into the ocean. Though unsafe, each wave pushed me just a little closer to shore and as they did the voices from the beach grew louder. Now, I can hear them more clearly, but as I near the shore, the waves are bigger. They try to push me under, and the current tries to pull me back out. Sometimes the noise of the waves drowns out the voices. But they call out again, a little louder, until I hear. They are teaching me to surf — to ride the waves — and I know, now, how to make it to the beach. There are more people there, encouraging me and believing that I can do it. I’m exhausted, but I’ll make it, and I know that when I reach the sand they will help me up. I’m drawn to the ocean, and I’ll walk on the beach again. But if I go into the water, even just paddling in the shallows, I’ll call out for someone to come with me and hold my hand. And just in case, I’ll learn how to surf. If I do fall, I’ll know how to make it back, and if I see someone else struggling, then maybe I’ll be able to help them. To the people who have “come to the beach”, called out to me and not left – and to Nicky in particular who was there when I fell – thank you. I will walk with you on the sand soon.

"You can’t stop the waves, but you can learn to surf"



Te Kore: Using the Māori creation story to navigate autistic inertia Some people living with autism find it hard getting started on tasks - but they can also have difficulty stopping an activity. This ‘stop and go’ struggle could be what is called autistic inertia. It can underlie many of the key characteristics of autism, including common behaviours such as special interests, difficulties in decision making and challenges with transitioning. Tanea Paterson (Dip. Applied

Addiction Practitioner) is a mum, autistic, home educator and Chinese crested dog owner. She has looked in-depth at autistic inertia and believes it doesn’t have to be a purely negative phenomenon. Using parallels with Te Kore, the Māori Creation Story, Tanea provides a framework for how we could look more positively at autistic inertia. Rather than viewing inertia as a total negative, it can also be seen as either “a place of a necessary void or a time of swift progress”.

What is Te Kore – the Maori Creation Story? The Māori Creation Story begins with a time when there was no time, known as ‘Te Kore’, the chaos, or the void. The period of Te Kore expressed the idea of a vacuum in nature wherein nothing existed. From this space of ‘nothingness’ came chaos which led to great darkness, the realm of ‘te po’. It is in that great darkness that everything evolved. This is where the primordial parents Sky-father Ranginui and Earth-mother Papatūānuku appear. It is suggested that Te Kore means chaos – a state which has always existed and which contains ‘unlimited potential for being’. Māori Marsden, a Tai Tokerau elder and Anglican minister, had a similar belief. He said that Te Korekore, a variant of Te Kore, was ‘the realm between non-being and being: that is the realm of potential being.’ Some believe that Te Kore is where the ultimate reality can be found. The idea of Te Kore is central to notions of mana/status, tapu/ sacred and restricted customs and mauri/life force. These beliefs are an integral part of Māori and are found in many places, karakia and waiata. Beliefs such as these support culture and identity, which are two words we do not use enough when we think of autism and autistic people.

Te Kore and autistic inertia In physics, inertia is defined as an object that continues in motion unless stopped or changed by a force. Alternatively, an object at rest tends to stay at rest unless changed or moved by a force. In autistic inertia the motion, or lack thereof, is related to a person's attention, thinking, or movement. This phenomenon is often at the very core of the psychological health problems faced by those on the spectrum. Te Kore – the Maori creation story - and autistic inertia have parallels, the chaos, the void, the time when there is no time. I dare to suggest that inertia is at the very heart of our challenges, as well as the fuel of our strengths. Using Te Kore as a descriptive image as a way to visually portray autistic inertia can be very helpful to view times of inactivity or fast activity as productive, not wasteful. Storytelling can be used as a


powerful communication bridge and can help autistic people identify with what they are experiencing. Traditional stories can be particularly useful when people are in distress, feel disconnected or lost. The themes introduced can be powerful descriptors and visualisations

Symptoms of autistic inertia Symptoms of autistic inertia include difficulties "getting started", getting one's body in motion and adjusting movements to rapidly changing surroundings. Some people also have difficulty performing a task before they have full understanding of what needs to be done and why. On the other hand, autistic inertia can also make it difficult to stop a task once engaged or someone may get “stuck” halfway through a movement or repeat an action indefinitely, as with stimming. Inertia also applies to a person's hyper-focused attention, fixation or special interest.

Implications of having autistic inertia This different way of moving leads to us being perceived by others in a number of not-so-great ways. This affects how others see us and treat us, and also how we treat ourselves. Symptoms of autistic inertia may manifest in maladies such as over- or under-eating, substance use, gambling, self-harm and more. Inertia, both physical and psychological, impacts on all realms, the body, mind, spirit and whānau. Realm

Inertia - The Void

Inertia - The Chaos


Lack of movement/ fitness. Self harm to ‘feel something’.

Not meeting needs - food/ drink/sleep. Substance use.


Feels stuck, depressed. Not getting to appointments, meetings.

Anxious, not mindful. Not stopping with enough time for the next activity.


Feel hopeless, unable to move. May be medicated for depression.

Never resting or catching up. May be medicated for anxiety or ADHD.


Unable to contribute, frustration, seen as lazy. Being left out, invisible.

Not being available, seeming disinterested in others. Intense or obsessive.

Most concerning are the implications for the autistic person’s psychological health. Often people on the less visible part of the spectrum are seen in mental health services when their wellbeing has been seriously compromised. Why are they here and not being supported within the disability services? I believe that this is often because carers are not aware of autistic inertia, therefore they do not realise the extent to which it can manifest in someone’s life.


Asking for help Inertia is something that is written and spoken about within the Autistic Culture, however not so much within the support services. I have asked services for help a number of times for autistic inertia, it sounded a bit like this. “I can write plans, timetables etc but I can’t sustain them. I can’t keep on track so my anxiety and depression get overwhelming, and then I am no longer able to do anything at all. Or I drown myself in my focus interest at the cost of my personal needs or those of my whānau. Can you please help?” Because they don’t understand the frequency and intensity of this problem, they hear “I am a bit disorganised and/ or obsessed” and my plea for help is dismissed.

“Te Korekore is the realm between non-being and being—that is, the realm of potential being. This is the realm of primal, elemental energy or latent being. It is here that the seed stuff of the universe and all created things gestates. It is the womb from which all things proceed.”¹ Rev Māori Marsden Neurotypical people relate it to their experience of getting a bit off track, feeling unmotivated or ‘deeply into their hobby’. This is similar to how the people who have never been crippled by anxiety compare social anxiety to feeling a bit nervous before attending an event. Unfortunately, this inability to put themselves in our shoes minimises our struggle with inertia, often to the point of not implementing strategies that would serve as an early intervention. The ability to hyper focus for long periods of time and ‘get things done’ can lead to high levels of academic achievement, musical, maths and art, as examples. In this aspect inertia can be positive. Although, in some settings this can cause issues with the people around the person, be it class or workmates or whānau. It can also cause deep frustration for the autistic person when others around don’t ‘keep up’ with them or ‘wait for’ them.

Autistic people have spent their lives speaking a language that doesn’t elucidate their needs accurately. Verbal communication feels like a second language and much of what we need to express gets lost in translation. What is in our heads sometimes seems impossible to put into words. That’s why it’s helpful to construct a visual translation by using mythology and fantasy to represent the complexities.

An alternative perspective – using Te Kore for autistic inertia Imagine if you will, Te Kore as a visualisation and symbolism of the unlimited potential of the person who is experiencing inertia. Rather than viewing inertia as a total negative, it can also be seen as either a place of a necessary void or a time of swift progress. If you or a loved one get stuck in a state of autistic inertia which is causing tension or grief, use your mind to visualise things from a different perspective. Imagine that time of Te Kore, a time of gestation, a chaotic void waiting to produce life. This time is not wasted, it is an incubation period. It may seem too fast, or too slow, however this is the nonlinear world of autism. And after darkness comes light and with light there is life. ‘Tihei Mauri Ora’ From a more practical point of view, seemingly simple reassurance and time management strategy could increase positive outcomes for those experiencing problematic inertia. 1) Offer empathic feedback “I see that you are having difficulty getting started/taking a breather, would you like some help?” 2)

Give gentle advice remembering the onus is on self- efficacy. If the autistic person agrees to receiving your advice, give short concise and only one or two ideas that you think might help.


Allow the autistic person to come up with their own plans or goals. The SMART goal framework is a simple and effective tool. Specific, Measurable, Achievable, Realistic, and Time-bound.

4) Act as a supportive guide to help keep them on track with daily/weekly reminders, text, email etc It is important for the psychological health and wellbeing of an autistic person to be reassured that things don’t always go to plan. Remind them that getting stuck or not being able to stop is a part of their brain's unique processing, and it is not a reflection of who they are, it is not their fault. Autistic inertia is not a chosen behaviour, it is a person who is having difficulty in their ability to manoeuvre. I believe that no time is ‘wasted’ during the state of autistic inertia. Experiences of our past are timeless upon reflection.

¹Māori Marsden, ‘God, man and universe: a Maori view.’ In Te ao hurihuri: aspects of Maoritanga, edited by Michael King, 118–138. Auckland: Reed, 1992.



Paula Jessop presents at a recent Hamilton Altogether Autism network meeting

Peer support

A framework for a good life Paula Jessop is a member of the Altogether Autism consumer reference group and frequently brings a lived experience perspective to Altogether Autism network meetings. She is currently working toward the National Certificate in Peer Support (mental health) in her role as a support worker for Emerge Aotearoa, an organisation that provides community-based mental health services. Paula talked with the Journal about the philosophy behind peer support and how the framework of peer support could be useful to support autistic people. Paula Jessop has been interested in mental health’s peer support concept for some years.

“Peer support is about walking alongside somebody, so it’s a slight shift in power dynamics.

Studying the National Certificate in Peer Support will enable her to work with people in a slightly different way – one that recognises her own life experience and places greater emphasis on assisting people to make decisions and set their own goals for a good life.

“It’s a philosophy that acknowledges people have their own expert knowledge of what they experience, rather than the old style dynamic of working with people where the clinician is the expert.”

The peer support model values the experience of mental health workers who also live with a mental health condition themselves. The natural consequence of this approach is a greater understanding and recognition of the experiences of the person they support. Paula observes peer support is a strong movement in mental health that differs from traditional support models where medical professionals usually take the lead.


This philosophy allows Paula to draw on her own experiences living with bipolar to support others with mental health conditions. Lived experience of mental illness is just one requirement of a peer support person. Good listening skills and an ability to show empathy for what others are experiencing is also vital. In addition, the National Certificate in Peer Support provides guidance on how to help others to set goals and work towards achieving them.


“You’re trained in things like understanding models of change so you can assist people to make changes in their lives,” Paula says. While there may be some challenges for people with autism working in the mental health sector, Paula doesn’t believe it presents any additional barriers. “I don't know if it’s any more challenging than an autistic person in any workplace,” Paula explains. In fact, Paula credits Asperger’s for her ability to be more sensitive to changes in behaviour.

experience and then there’d be an exchange of ideas. So it was those things that made me think that peer support would be good for people with autism.” One of the key aspects of the mental health peer support model that makes it suitable for people with autism, is that it’s not preoccupied with wellness. “Peer support starts with the premise that a person doesn’t have to recover from their condition to have a good life,” says Paula. “A person can actively experience symptoms of whatever condition they have and potentially be able to have a good life.”

“I tend to intellectually analyse people. I don’t assume that I understand people, so I put a bit more effort into trying to understand their different patterns of behaviour, which then becomes quite useful. If I’m working with someone with bipolar, I get quite good at noticing warning signs before they get manic or depressed.” Paula also believes Asperger’s¹ gives her greater insight into what the people she supports are experiencing.

“For peer support, diagnosis is irrelevant”

This differs from the traditional medical model that clinicians use, which focuses on weaknesses or what’s wrong with a person. “For peer support, diagnosis is irrelevant. You're not thinking about a person’s diagnosis or their label or what’s wrong with them. You're working with an individual and getting to know them and the strengths they have that might help them do well in life.”

“Having lived experience of a condition that isn’t going to go away does tend to give me a higher level of empathy or understanding for the people that I work with. I know what it’s like to live with a condition that interferes in your life and makes it difficult to gain employment and things like that.”

As Paula points out, this strength-based model can be used with anybody, with any condition, whether it’s mental illness, disability or autism. And having support from someone who has insight into their lived experience has additional benefits.

The National Certificate will provide Paula with the skills required to provide peer support in the mental health sector, but she sees potential for the model to be used more broadly.

“One of the benefits of peer support for people with autism is having someone who inherently understands them; who knows how to interact with them and communicate with them; and who has some understanding of the types of problems they may experience due to their autism or due to being an autistic person in society.”

“Peer support is currently focused on mental health, but the concept could easily apply to autism as well.” Although Paula hasn’t formally received support from a peer, she knows how important it can be for people with autism to connect with other people on the spectrum. “One of the things I found really helpful to be able to function well myself while having autism was reading autobiographies from other people with autism. I found that more useful than anything I’d ever done with a counsellor or psychologist,” says Paula. “I also found going into Facebook groups with autistic people really helpful. People would have conversations about their

This insight means a peer can better help someone identify their strengths and then support them to set realistic goals and achieve them. In practical terms, says Paula, you could apply the framework to assist a young person to move out of home, or assist people in study or work. “Peer support is about empowering people to be good selfadvocates - to advocate for themselves in the world some way,” says Paula. “And it’s about working with people from the basis of assuming competence; that they can do anything they want to do if they're given the right supports. They're empowered to find their own way through all sorts of challenges - that’s what I like.”

¹In this article, we have used the term Asperger’s to refer to Paula’s autism as it is her term of preference.


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Working across disability support services and mental health services: Collaborating for better outcomes Amanda Bleckmann is the manager of the Family and Community Support Team, Disability Support Services at the Ministry of Health, who oversees the ASD work programme (supplied by MOH).

The people and the services Many people with Autistic Spectrum Disorder (ASD)1 also experience mental health issues. Often their needs assessment and finding the right health services can be complex. Services need to take a collaborative approach although they often have different models of care, eligibility criteria and places of work. In 2014 the Ministry of Health (the Ministry) clarified eligibility for all people diagnosed with ASD. This clarification applied to people with ASD who have no coexisting eligible disability, such as an intellectual disability. It has helped create a consistent national approach to eligibility criteria for access to disability support for people with ASD. Within the Ministry, the Office of the Director of Mental Health, the Mental Health Service Improvement Group and Disability Support Services (DSS) agreed to work together to support the implementation this clarification. All are committed to working together to ensure the best outcome for people with ASD. Implementing this clarification requires that the local District Health Board (DHB) Mental Health services and Needs Assessment and Service Coordination (NASC) work together. It also requires a commitment and acknowledgement that complex situations may require collaboration to find pragmatic

‘whole of health’ solutions. To help facilitate this process, the Ministry implemented the ASD Panel.

Challenges of cross-service provision

One of the most noticeable differences between Disability Support and Mental Health services are the models of care. The disability-related needs of people with ASD tend to change only slowly. Therefore, disability funded services are reviewed annually or when a significant change occurs in the person’s circumstances. Disability service models are designed to moderate the impact of a disability and support people to live the life they want. Mental health services, on the other hand, are designed to address mental health needs through a recovery approach. Mental health conditions are often episodic in nature. Mental health interventions tend to be shorter and occasionally the person needs an acute intervention. As a person recovers from an episode of mental illness, specialist mental health care is followed by discharge to the care of the primary health provider (usually the person’s GP).

The ASD Panel The ASD Panel was set up to help facilitate access to services for people whose needs don’t fall within a single service. Often people whose situation is referred to the Panel have diagnoses that are unclear and whose support needs include Mental Health and DSS. The Panel does not have the mandate to make funding decisions. Rather, it makes recommendations to the local NASC or corresponding Mental Health service on the types of supports needed to help the person live a more independent life. Essentially it helps to facilitate the best services for the person and share accountability between Mental Health and Disability Support Services.

¹In this article, we have used ‘ASD’ instead of ‘autism’ because the formal diagnostic term is ‘Autism Spectrum Disorder’, abbreviated to ‘ASD’.



The process When aspects of a person’s mental health treatment impacts on their ability to benefit from disability support services, a joint approach is imperative. If services cannot agree on diagnoses or service provision, either the mental health service or the NASC can ask the ASD Panel to assist. Typical points when these happen are when: •

A diagnosis is unclear

There is disagreement about the extent of the support needs

There are difficulties in deciding the differential responsibility for the support (as this often has budget implications)

There is lack of support service options in the local area.

Upon receipt of referral, the ASD Panel considers all information presented. Often this includes assessment information, a brief history of successful and less successful interventions and the rationale for the proposed support options. The Panel meets fortnightly when required. Meetings are focussed on defining the issues and finding the right solution for the person. If no existing services can meet the person’s needs, the ASD Panel may recommend a personalised response that encompasses elements from both mental health and disability models of care.

The outcomes In the two years since this joint approach has been operating, there have been marked improvements in collaboration between services. In the 2015/16 year, over 1300 people who had ASD as their primary support need, were referred for support services,but only one percent required assistance from the Panel.

brothers do not have ASD. Jenny is supported at school through access to Ongoing Resource Scheme (ORS) funding as she has limited verbal skills. About two years ago Jenny began to experience episodes of acute anxiety. At these times she would become aggressive, seek solitude and resist attempts to calm her down or to follow her. She would go to some lengths to seek isolation from others, and on one or two occasions became lost when leaving her home or the school grounds. Over time, these acute anxiety attacks became more frequent and her aggression more focussed on her brothers and parents. Jenny had been receiving respite but this seemed to be contributing to her isolation. This was because she was leaving home for her respite and said she felt lonely when away from family. Assessment through the local Child and Adolescent Mental Health Service (CAMHS) resulted in a diagnosis of depression and anxiety so medication and therapy was offered. Jenny’s behaviour continued to be aggressive at home. While her anxiety seemed to be less severe, her behaviours continued to cause concern. A Behaviour Support Services referral was made to the provider to work with Jenny, her family and the mental health team to address her challenging behaviours. Respite was arranged at home rather than out of home, and ways of supporting Jenny when she was anxious were introduced by the mental health service and incorporated into the behaviour support plan.

Case study

Some on-going telephone communication between the Behaviour Support Service and the CAMHS was required to ensure their respective interventions worked well together, as well as providing regular contact with the family. Over time, Jenny has made progress and her family are better equipped to help her when things start to escalate.

Jenny* is a 17-year-old woman with ASD. She has been living with her family while attending a local high school. Her younger

*Jenny’s name has been changed.



Autism in adults

What do mental health services see? Until recently, much of the knowledge and understanding of Autism Spectrum Disorders centred on child and adolescent mental health and developmental paediatric services. According to Dr Kev Appleton, many adults with autism and mental health issues struggle to find the support they need due to misdiagnosis and lack of training. Dr Appleton is a child and adolescent psychiatrist with Whirinaki Child, Family and Youth Mental Health, Counties Manukau District Health Board - and Starfish Psychiatry. He is also an honorary senior lecturer in psychological medicine at Auckland University and a member of the Altogether Autism Professional Expert Group.

Autism services for children and adults Services for children and young people with autism have developed significantly in the last decade. However, until very recently, it was as if the disorder mysteriously disappeared on the young person’s 18th birthday. Much to parents’ frustration and despair, coming of age also meant the end of their child’s involvement with mental health services. The way forward for a minority was via the private sector, by accessing interested child psychiatrists or psychologists prepared to offer continuity of approach into young adulthood. For others, especially depending on the area they live in, there may be no plan B available. There has been considerable confusion around autism in adult mental health services. Autism only entered professional consciousness in child and adolescent focused services over the last 15 years or so. During this time, we have heard a range of unhelpful comments from services for adults: “ASD doesn’t exist”; “Everyone has it these days”; “It’s the new ADHD”; “Sorry but we don’t have the contract for that”. Adult services had not grasped that they were already seeing plenty of people with autism but had not realised it.

Co-morbidity and autism In adults with autism, the core diagnosis often goes unrecognised and undiagnosed. It is the co-morbidity that gets all the attention. “Co-morbidity” describes the occurrence of one or more disorders in addition to a primary diagnosis. It is very rare for a primary mental health diagnosis such as depression, psychosis, anorexia nervosa or bipolar disorder to occur in isolation from other symptoms/syndromes, because co-morbid or additional diagnoses are closely linked from a genetic perspective. Disorders such as autism, ADHD (Attention Deficit Hyperactivity Disorder), anxiety, depression, tic disorders and OCD (Obsessive Compulsive Disorder) share the gene groups that underpin them. These may express themselves fully, or only partially, depending on the combination of multiple genes inherited. It also depends on whether these inherited genes are ‘switched on’. Switching on of inherited genes occurs by what are referred to as ‘epigenetic’ mechanisms. The ‘epigenetic’ triggers to switch on transmitted genes may include adversity, toxins, infections, or environmental factors that trigger a stress response. Some can occur even before the child is born.


In addition, the presenting features of the core diagnosis are often misdiagnosed as something else, such as schizophrenia, OCD or personality disorder. Many people with autism also have either specific learning difficulties or specific learning disorders. Without specific training in developmental disorders, autism may not be diagnosed at all. We see what we know and ignore or miss what we don’t. Many adult mental health clinicians have little or no training in child and adolescent mental health or developmental disorders such as autism.

Effects of medications Young people over the age of 18 years with autism may often be referred to adult mental health services. Assessment and diagnosis of the co-morbid disorder may occur without services ever picking up the developmental aspects of their condition, and improvement of the person’s mental health may therefore be somewhat hit and miss, although the unpleasant and distressing symptoms of the co-morbid disorder may be reduced by treatment of the depression, anxiety, ADHD, Tourette’s syndrome¹ or other conditions. In some cases, things may not go so well. People with autism are often very sensitive to the effects of medication. Their reactions may be atypical. If the presenting symptoms do not resolve, medications may be increased. The medication side effects may then become problems all by themselves. Lack of continuity of care may compound these effects. Turnover of staff in the public system is frequent. A new clinician may pick up a client with a combination of medications based on the wrong diagnosis. Side effects may be distorting the picture, which is now buried beneath layers of misunderstanding of the core issues.

How can family and professionals help? Referral of adults with autism for assessment of a co-morbidity is an opportunity to considerably improve their quality of life and functioning – so keep pushing for those appointments and referrals. Recognition, referral, assessment, diagnosis, management and needs assessment of autism and its co-morbidities represent a major training issue for our health professionals, so parents and caregivers do need to drive these processes. Be assured that the adage ‘ASD cannot be treated’ is likely to be wrong. The identification and treatment of anxiety, depression, concentration, impulsivity, executive functioning and tics may considerably improve a person’s life. In the meantime, parents and families need to use all available media and material to be as well informed as possible, so they can advocate for their loved ones.

¹Tourette’s syndrome is a neurological disorder characterised by involuntary tics and vocalisations and often the compulsive utterances of obscenities



A new guide for the journey to mental wellness A new book examines the difficulties that people on the autism spectrum encounter when they also experience mental illness. The Guide to Good Mental Health on the Autism Spectrum looks at common mental health issues and gives guidance on treatment options, as well as strategies to improve and maintain mental wellness. The inclusion of personal stories and mentoring advice from a lived experience perspective makes this book a useful resource for people on the spectrum, their families and friends, and health professionals alike. Co-author Dr Emma Goodall explains why the book was written and who will find it most useful. How did the Guide come about? Jeanette Purkis had wanted to write this book for a long time and I suggested that Jane Nugent be involved. Jane is able to give clinical perspectives to clinicians, and Emma Goodall help people on the spectrum and their families and carers to understand these perspectives. She’s also really good at conveying pyschopharmacology information. I asked Jeanette if I could work with them adding some extra bits along the way to link Jane and Jeanette’s sections together. Who are you most hoping will pick up the book and read it cover to cover? Clinicians and adults on the spectrum – both of them need to understand how mental health and autism intersect and how the communication style of autistic people can complicate things, and how to manage that. How did the collaboration process work? It was an amazing collaboration. Jane did the clinical sections, Jeanette the peer mentoring and I did most of the other bits. It is great to have lived experience, clinical and support services – experiences all represented by the authors. We can reach a wider audience and ensure that all those people gain a shared understanding of the issues and possible strategies for individuals on the spectrum struggling with their mental health. The section on the therapeutic benefits of pet ownership was very interesting – do you have a pet yourself? Jane and I have a large, long-haired German shepherd called Rocky. When I am distressed, he comes over for a check and a quick pet and then lies down close by – but not touching – which is perfect for me. Jeanette has a cat, Mr Kitty, who adopted her. We are all animal lovers and find interacting with our pets very therapeutic as they are so much easier to understand than people! What other resources would you like to see for people on the spectrum who are also living with mental health issues? I would like to see mental health teams in New Zealand become much more aware of autism and how it impacts on children and adults and learn how to communicate effectively with autistics to support them to live well.

I would also like schools to be more aware of proactive strategies that support the mental well-being of children and young people on the spectrum and help them build resilience and self-confidence, and decrease anxiety. I have been working on developing some tools for this using interoceptive skill teaching. Interoception is the awareness of internal biological signals — such as the heart rate, breathing and temperature —that tell us what we are feeling. However, if we don’t recognise or understand these signals, we can end up in fight/flight/freeze situations with no warning. This can be problematic for us as autistics. People on the spectrum often need to learn how to recognise these internal body signals so they can self-regulate before their anxiety escalates, and one of the most effective ways of learning new skills is to be explicitly taught them. What other advice would you give to people on the spectrum who are also struggling with their mental wellness? We feel strongly that people can struggle at times, but access to good information can help on the journey towards living well. Mindfulness can help people to live in the moment and break that negative, broken-record thinking that so many of us on the spectrum experience on a daily basis. Negative thinking makes it much harder to live well and be content. We need to cherish ourselves and be kind to ourselves, even when life is tough. Jeanette Purkis has lived experience of autism and mental illness and is also the author of two books looking at aspects of autism. She works full time in the Australian Public Service. Dr Emma Goodall has Asperger’s syndrome and has professional experience of mental health services. Emma is a senior autism advisor in South Australia and an executive committee member of the Australian Society for Autism Research. Dr Jane Nugent is a psychiatric career medical officer with general practitioner training. Jane has been involved in pharmacology teaching for a variety of New Zealand and Australian institutions since 1997.

Win a copy of The Guide to Good Mental Health on the Autism Spectrum. See page 3 for details.



Depression in adults with autism Martyn Matthews is national clinical practice leader for IDEA Services. His role involves providing clinical leadership to a range of services for adults and children with intellectual disabilities and/or ASD and specialist services for children with ASD. He was co-developer of the ASD Plus programme and a co-author of the New Zealand version of the Growing up with Autism programme.

Background Depression is a common mental health problem, affecting around six per cent of New Zealanders every year, the Health Promotion Agency found in 2014. There is a significant amount of research indicating that adults with autism experience increased rates of mental illness, particularly anxiety and depression, (Cederlund et al., 2008; Howlin, 2007; Howlin et al.,, 2012; Tantam, 2000), meaning that they come into frequent contact with psychiatric services (Mazzone et al., 2012). A study by Tony Attwood (2003) in Australia showed a 65% lifetime prevalence of conditions such as anxiety and depression in a group of adolescents and adults with Asperger syndrome. Our knowledge of autism in adulthood is very limited when compared with the enormous amount of available data on children (Bejerot et al., 2008). Both Leo Kanner and Hans Asperger, the two pioneers of autism research, were concerned about what adulthood would hold for the children they diagnosed and they both followed up on small numbers of their patients into adulthood, but published very limited details about their findings. At present, we are not really sure what proportion of adults with autism have an intellectual disability, although the work of Eric Fombonne (2007), where he analysed 21 surveys of autism, suggests that 30% of individuals with autism have no intellectual disability (ID), 30% have a mild to moderate ID and 40% have severe or profound ID. More recently, it has been suggested that the proportion of those who do not have intellectual disabilities is higher still. For those adults who have autism and intellectual disabilities, their


difficulties with verbal communication means that diagnosis of mental health problems can be a time-consuming and complex process, often relying on information provided by family members or support workers. My interest in this area of research grew from my own experience of working with adults and children with autism, including my attempts to understand their thoughts and feelings and how these affected their daily lives. A number of the adults with Asperger syndrome I had been involved with as a clinician had talked to me about the difficulties they experienced coping with the demands of everyday life; about not being able to access help when they needed it and that when they did access psychiatric services, these services struggled to take account of their autism.

Depression in people with autism Early research into children with autism indicated a possible increased risk of depression. Kanner, the physician who first identified autism (1943), described one of the children in his study as often likely to lapse into a “momentary fit of depression� and, in the UK, Professor Michael Rutter (1970) noted the occurrence of depression among the children he studied. In the wider population, diagnosis of depression is usually made by a general practitioner, psychiatrist or psychologist, and is based on their observations during clinical interviews, plus the self-reports of the patient. However, depression in those with autism has been found to present in different ways, and is often seen in the form of behavioural changes such as withdrawal, increased aggression or an increase in repetitive or ritualistic behaviour (Ghaziuddin et al., 2002; Matson et al.,2014; Turygin et al., 2013). The diagnostic process can be more difficult for adults with autism, as they may have problems in communicating their thoughts and feelings to the clinician. A further complicating issue in diagnosing depression in children and adults with autism is that a number of the symptoms of depression seen in the general population are also known to be associated features of autism. Examples include disturbance of appetite, sleep, participation in activities and psychomotor issues (Lainhart et al., 1994; Perry et al.,2001). In the general population, depression frequently occurs in conjunction with an additional disorder, most commonly anxiety, but also with obsessive compulsive disorder (OCD) (Abramowitz, 2004; Fava et al., 2000; Hofmeijer-Sevink et al., 2012; Moller,


2002; Overbeek et al., 2002; Pollack, 2005; Sartorius et al., 1996) and other disorders. There is emerging evidence to indicate that this is also true for adults with autism. American psychiatrist Mohamed Ghaziuddin (2002) suggests that this is highly likely and that clinical opinion and case study descriptions provide evidence that as depression worsens, stereotypic or ritualistic behaviour increases to meet OCD diagnostic criteria (Stewart et al., 2006) or, in some cases, restlessness and hyperactivity increase to meet attention deficit hyperactive disorder (ADHD) diagnostic criteria.

So how many people with autism have depression? The multitude of different assessment methods utilised in the studies described in the preceding section means that it is hard to accurately identify rates of depression for adults with autism. However, from 10 research studies I recently reviewed, adults with autism were about four times more likely to experience depression than other people. Findings from my own PhD research indicated that 26% (12 of 46) of adults with autism were currently experiencing significant symptoms of depression. However, 39% (12 of 31) of those with autism plus ID, and 60% (9 of 15) of those with ASD only, were taking anti-depressant medications.

Assessment of depression in adults with autism Although clinicians should always seek information about mental health problems from the person with autism, this may not always be effective due to the communication difficulties which are a core feature of autism. Mazefsky et al. (2011) suggest there is some evidence that cognitively able adolescents and adults are able to self-report their psychiatric symptoms to a degree, but that parent or carer response to a structured clinical assessment tool was more accurate and effective in identifying mental health problems. Research has shown that self-report is not a reliable method for those who have significant language difficulties or intellectual disability, meaning other methods are required (LoVullo et al.,2009; Matson et al., 2008).

There is a range of such scientifically validated instruments designed to assist clinicians in making diagnoses amongst adults with intellectual disabilities, which have included adults with dual diagnoses of ID plus ASD in their test populations. Some of these tools have been in use for many years and may use the outdated term of mental retardation instead of intellectual disability. However, despite the outdated language, they are still valid and useful tools. Commonly used tools include the Reiss Screen for Maladaptive Behaviour (RSMB) (Reiss, 1988), the Psychopathology Inventory for Mentally Retarded Adults (PIMRA) (Matson, 1988) and Psychiatric Assessment Schedule for Adults with Developmental Disabilities (PAS-ADD) (Moss et al., 1998), which may aid in screening and diagnosis of depression and other mental health problems in adults who have ASD and ID. A promising development is the publication of the Autism Spectrum Disorder-Adults Assessment Battery (Matson et al., 2008). This is a three-part screening tool comprising of ASD-DA, an autism diagnostic screen, ASD-CA; which is an ASD-specific mental health screening tool, and ASD-BP, a measure of current behavioural problems. However, this suite of screening tools is designed specifically for adults who have both intellectual disability and ASD. The ASD-CA comorbidity screening tool contains 37 items with five sub-scales for Anxiety/ Repetitive Behaviours, Conduct Problems, Irritability/Behavioural Excesses, Attention/Hyperactivity/Impulsivity, and Depressive Symptoms. As with screening tools for adults with ID, the ASDCA is completed using an interview with a key informant rather than the individual. Though this tool was developed for use with adults with intellectual disabilities I have used it with very able adults in my PhD research and found that it worked well, maintaining reliability and validity.

The most common of these methods is the completion of a psychiatric screening tool using carer report and/or clinical observation. Some studies have used assessment tools designed for the wider population, while others have used tools originally developed for assessing people with intellectual disabilities.



Figure 1: An example of an REISS Screen for Maladaptive Behaviour Scale

Figure 2: An example of an ASD – CA score profile

Two studies, Ghaziuddin et al. (1995) and Ghaziuddin et al. (1998) used the REISS Screen For Maladaptive Behaviour scale, a carer-rated assessment designed for people with ID, which takes into account behaviour over the preceding three months. Matson et al. (1999) utilised the DASH-II to assess depression in a population of 57 individuals with severe or profound ID, including 19 with ASD and ID. Bradley, Summers, Wood, and Bryson (2004) also utilised the DASH II to screen for psychiatric disorders amongst a population of adolescent and young adults with ID or ASD and ID (n = 171), aged between 14 and 20 years. They concluded that screening or assessment using an instrument such as the DASH II, which has behaviourally based indicators of mental health problems, was more clinically robust than applying standard DSM diagnostic criteria via clinical

judgement. Tsakanikos (2006) successfully utilised the PAS-ADD in a study of comorbidity amongst 752 adults with ID, of whom 147 also had autism.

Hare (1997) has reported on the use of the Beck Depression Inventory (Beck et al., 1961) for an adult with Asperger syndrome. The inventory is a self-rated, 21-item assessment tool, with each item having a four-point severity scale. Hare found that the numerical scoring of the inventory worked well for the concrete thinking processes of the individual described in this case study. However, he also comments that though the self-report format presented no problems for this individual, this may not be the case for less intellectually able individuals.

Conclusion and implications

There are a number of considerations to address with regard to the choice of assessment tool for adults with autism, including cognitive ability, language development and capacity to effectively self-report. Although measures such as the Hamilton Depression Rating Scale and the Beck Depression Inventory have been adapted, the difficulties with flexibility of thought which are inherent amongst individuals with autism may mean that many of the questions may be difficult for an individual with autism to answer. Some of the questions in instruments such as the Beck Depression Inventory or the Hamilton Depression Rating Scale may also be difficult for a carer or family member to rate. An alternative approach to identifying depression in children and adults with autism is the use of structured or semi-structured clinical interview tools. During the literature review process for this article, no studies were identified which used this approach with adults, although three published studies utilised clinical interviews with parents.


Many psychiatric screening tools can be scored and graphed to provide a profile of symptoms for the person. They often have a ‘clinical cut-off’ where if the person’s symptoms are at or above this point, then a clinical diagnosis is likely to be warranted. The graphs show RSMB and ASD-CA profiles for Brian (not his real name) a man with a severe intellectual disability and ASD who was experiencing a period of severe depression. For Brian, his depression often shows in the form of episodes where he is restless or agitated in addition to the more typical symptoms of depression.

The combination of atypical presentation of depression in adults with autism, and the difficulties which people with autism face in describing their thoughts and feelings, highlights a need for different assessment approaches to those used for their neurotypical peers. Research indicates that an assessment approach using structured self-reporting (Kanai et al., 2011; Ozsivadjian, 2014), combined with informant reporting of changes in behaviour (Gotham et al., 2015), is likely to be useful for those with good language comprehension and expression. For those with limited or no verbal communication skills, informant-rated scales combined with behavioural observations are indicated (Bradley et al., 2004; Brereton et al., 2006; Matson, 2008). Such behavioural indicators may include: withdrawal from usual activities, greater than usual eating or sleep disturbance, increased agitation or aggression and self-injurious behaviours or tearful episodes (Lainhart et al., 1994; Perry et al., 2001; Turygin et al., 2013). The use of psychiatric screening tools can also be beneficial for other reasons such as: • To help service providers better understand the mental health needs of adults with autism • Regularly, used as part of a clinical review process, so that changes can be tracked over time • On a planned basis, as measures of response to treatment or changes in support strategies


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PRISM Professional Development Series is for professionals working with people on the autism spectrum, including mental health practitioners. Developed by Altogether Autism, PRISM is based on academic research, clinical knowledge and lived experience, and delivered by specialist facilitators. All workshops are interactive, incorporating case studies, practical exercises, videos and group activities. Participants are provided with a comprehensive workbook and ongoing access to case study discussions and clinical research. The workshops offer a safe and supportive environment for participants to ask questions about autism. The facilitators provide best practice skills and strategies to develop your ability to interact positively and effectively with people on the spectrum and their families and whÄ nau.



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