Altogether Autism Winter Journal

Journal altogether autism

WINTER 2014

introduction and diagnostic assessment for autism spectrum disorder in children and young people diagnosis, identity and ‘that autism label’ identifying autism: limiting or liberating? diagnosis and identity ultimately, we just wanted our child to be happy: the story of cory’s family new asd diagnostic processes and tools for teens and adults

Journal altogether autism

WINTER 2014

in this issue

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Diagnostic Assessment for Autism spectrum disorder in children and young people: What to expect A comprehensive guide to what parents can expect when receiving a diagnosis

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0800 ASD INFO info@altogetherautism.org.nz www.altogetherautism.org.nz PO BOX 146 hamilton 3240

Diagnosis, Identity, and that Autism label Penni Winter talks about coming to terms with a diagnosis of Aspergers.

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Identifying Autism: Limiting or liberating?

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Diagnosis and Identity

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contact your local branch

Dr. Ava Ruth Barker considers social labels placed upon those on the spectrum.

The experiences of Leaupepe Taimaaiono Liz Tupua Talaepa’s family when they were given a diagnosis of Autism.

New ASD diagnostic processes and tools for teens and adults We just wanted our child to be happy Christina Slade shares her family’s experiences when their child was diagnosed with Autism.

One of Altogether Autism’s points of difference is our provision of tailor-made information packs. These packs are individually researched and compiled on request by a member of our Information Team working out of our National Office. The Team consists of Information Officers and Researchers all with skills and experience in searching out information from numerous verified sources. We intend for every pack to meet the needs of each specific request and each pack contains a wide range of relevant evidencebased material.

We can research a vast range of autism spectrum related topics, including information relating to the diagnostic process, coming to terms with a new diagnosis, communication and behaviour management

altogether autism provides services to gisborne, taranaki, hawkes bay & west coast from our national office strategies, toileting issues, social skills, transitions and puberty, plus many, many more. We can supply information to people on the autism spectrum, to parents, educators, support workers or any other professionals working with adults or children on the spectrum.

Altogether Autism’s information service also provides evidence-based information and advice through a clinical psychologist and a panel of professional experts (PEG). The PEG is there to answer or guide us around some of the more complex requests we receive. As well as consulting with the PEG, we also have available to us a consumer reference group (CRG), made up of people on the autism spectrum and parents of children, young and adult, on the spectrum.

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

DIAGNOSTIC ASSESSMENT FOR AUTISM SPECTRUM DISORDER IN CHILDREN AND YOUNG PEOPLE: WHAT TO EXPECT

By Jenny Gibbs Jenny Gibbs is a Clinical Psychologist who has worked at the Child Development Centre at Waikato Hospital for the past 21 years. She has a strong interest in neurodevelopmental disorders, in particular Autism Spectrum Disorder and Intellectual Disability.

The diagnosis of Autism Spectrum Disorder (ASD) in children and young people is important for several reasons. Diagnosis allows access to appropriate resources, support and assistance. More importantly, it facilitates understanding of the child by those who live with them, teach them and interact with them in their everyday lives. It also enables families to plan for a future that may be somewhat different to the one they expected for their child and for themselves.

The NZ Autism Guideline provides detailed guidelines on what constitutes a best practice assessment. In reality, the assessment process throughout NZ varies considerably depending on factors including the age of the child, the configuration of local services, whether there is a service in your area with clinicians who are specialist in ASD, and if so, whether the ASD expertise sits across a multidisciplinary team or whether it sits with a sole clinician who has ASD specialist knowledge.

Wherever your child’s assessment takes place and whether it is by one person or a team, a diagnostic assessment should include: 1) Informed consent.

This would typically be a discussion with you about the purpose of the assessment, what is involved for you and your child and the opportunity for you and your child (if they are old enough and have sufficient language ability) to ask any questions about the risks and benefits of diagnosis and who the results will be shared with. The opportunity to clarify what is happening, to ask questions or to change your mind about having the assessment should be available to you throughout.

2) A comprehensive developmental and family history.

You can help with this process by bring your child’s health development record, which hopefully contains information about your child’s birth history and developmental milestones. When and how language and communication developed is of particular importance in the diagnosis of ASD. It is

also helpful if you can find out from your extended family about whether there are family members who have had differences or difficulties in their social skills, communication skills, learning or mental health. This is of interest because ASD does tend to run in families.

3) Observations of the child in different environments e.g. in clinic, at preschool or school and at home.

Observations of the child should be systematic and focused on social, communication and play skills. In very young children with severe ASD symptoms, the diagnosis of ASD can be made by an experienced clinician on the basis of a brief clinicbased observation in combination with a focused discussion with caregivers. More subtle ASD presentations may require observations over time in different settings, including in unstructured settings with unfamiliar people. Sometimes diagnosis may involve the use of an assessment tool such as the Autism Diagnostic Observation Schedule.

There are times where direct observation can be difficult: for example older children or adolescents may not welcome an observer in the classroom or playground. In these cases the clinician may ask to interview the young person’s teacher about their social and communication skills in the classroom or playground.

4) A communication assessment.

Ideally this is done by a speech-language therapist (SLT) with ASD specific skills and experience. Within specialist ASD services, the SLT will be part of that services’ multidisciplinary team. In other cases the speech therapist may work for another agency, for example the Ministry of Education, but their assessments will form part of the information that the diagnosing clinician will consider.

5) Assessment of mental health and behaviour.

ASD often goes hand in hand with other conditions.

Conditions such as Attention-Deficit/Hyperactivity

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Disorder, learning difficulties, anxiety and behaviour problems are common, and the diagnosing clinician will be thinking about whether the child has one or other of these conditions (differential diagnosis) or a mix of some or all of them (comorbid conditions).

6) An assessment of the needs of your family.

Having a child with a developmental condition is stressful and there is evidence that the parents of children with ASD experience higher levels of stress than parents of children with other conditions. Most District Health Boards now employ an ASD services coordinator whose role it is to ensure that families receive information about services and supports and make referrals where necessary.

The following are parts of an ASD assessment which while not essential to the diagnosis, are desirable and can be helpful for some children and young people.

1) A medical assessment.

Although not part of the diagnosis, a medical assessment is usually carried out. There are some medical conditions, such as epilepsy, that are more likely in the ASD population. Testing for chromosomal abnormalities may be recommended after discussion with you. Young children should always have their hearing checked.

2) A cognitive assessment.

In services that employ psychologists, a cognitive assessment may be carried out. This can be helpful in identifying areas of strength and difficulty in the young person’s thinking skills. It can also be helpful in establishing what kinds of disability supports the child or young person might be entitled to (there are different services available for children who have an intellectual disability as well as ASD). Finally it can be helpful in predicting the level of support that might be required in the future.

3) An assessment of sensory and motor development.

Sensory differences are common in ASD, so you will always be asked about whether your chid has now or in the past overreacted or under-reacted to sound, touch taste. Problems with coordination or clumsiness are also common, which can affect how the child manages tasks including dressing, feeding, handwriting. These areas can be assessed in detail by an Occupational Therapist (OT) if they are affecting the child’s ability to manage those day to day activities.

The length of time a diagnostic assessment takes varies depending on the age of the child, their symptom

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severity, the type of assessment that is necessary and how many clinicians are involved in the assessment.

Usually at the first meeting the clinician(s) will be able to tell you what they are intending to do and why, and how long they expect it to take. A diagnostic assessment could take as little as one hour for a young child with severe symptoms. However a child with more subtle symptoms or a complex presentation which requires comprehensive assessment could take up to eight hours. This might involve two or more extended clinic visits as well as one or more observations in the child’s home, preschool or school and would take place over days or weeks.

The diagnostic process can be difficult for families.

Whether a diagnosis of ASD is made or not, it is never easy to go through a process which can feel like your child, you, your family, your parenting, your own coping are being enquired about in a level of detail which can feel intrusive. The diagnosis itself, whether you have been expecting it or even hoping for it can be a real shock. A common reaction to diagnosis is difficulty remembering any of the discussion after the diagnosis was made. You should always feel able to contact the person/people who did the diagnostic assessment to arrange a follow-up appointment to ask any questions you might have in the days following the diagnosis.

Doubt about the accuracy of the diagnosis or about the competence of the clinician(s), anger, grief and despair are also common. Other people experience a great sense of relief as there is now an explanation for their experience, although this relief can then give way to anxiety about what the future may hold. When the diagnosis is made with older children and adolescents there needs to be discussion about what the young person needs to be told, when and by whom.

There are many ways in which support can be obtained through this time; through services such as Altogether Autism and Autism NZ and through the ASD coordinators. You are not alone and you will adjust to this new reality although it may take some time.

Jenny is a member of The Altogether Autism Professional Expert Group and was a member of a reference group which gave input into the development of a training toolkit on ASD assessment, diagnosis and clinical management for paediatricians, psychiatrists, and psychologists. She was subsequently invited in 2011 and 2012 to co-present this training to these professional groups. She is in her second term as representative of the Central North Island Allied Health and Nursing members on Council of the Paediatric Society of New Zealand.

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DIAGNOSIS, IDENTITY AND ‘THAT AUTISM LABEL’

By Penni Winter

For most of my first fifty years, I was stumbling in the dark. From the age of about seven, I knew that I was ‘different’, though I didn’t understand exactly how. All I knew was that I was constantly breaking social rules I hadn’t even known existed till I transgressed them, or somehow thinking and reacting differently (and hence ‘wrongly’) to others, or doing something else ‘wrong’ - and suffering the negative consequences of all this. I searched long and hard for an explanation of my shameful ‘difference’, but nothing ever seemed to fit.

Despite this, when I first began to realise some years back that I ‘might’ have Aspergers, it came as a shock, and I initially rejected it. I’d discovered by then that Aspergers was on the autism spectrum, and I’d thought of autistics - if I thought of them at all - as those ‘strange’ children (I’d only ever met autistic children at that point), probably severely intellectually disabled, certainly not quite ‘all there’. My first reaction therefore was “I’m not an effing retard!” I knew instantly this was silly - I was then working with an Aspergers kid in a school who was definitely of normal intelligence. But that was the image of autism I had.

I’ve since seen many others resist the label of autism, either for themselves or their children, for similar reasons. (While some will accept the Aspergers label, but not the autism one, because, as one Aspergers (‘AS’) woman said, “I’m intelligent, therefore I can’t be autistic.”) Even if they realise the stereotypes are just that, stereotypes, they still fear that they or their kids will be ‘pigeonholed’, and their life choices restricted, not to mention being judged by others. Autism is still almost always presented negatively in the media we’re a ‘disease’, an ‘epidemic’, a ‘burden’, mentally ill, ‘lost in our own little worlds’, non-verbal (and hence, it’s assumed, ‘non-intelligent’), and so on. Back when I was first investigating Asperger’s, that was far less visible. We’ve featured more widely in the public eye in recent years, but just as negatively - if the media can be believed, we’re all mass murderers, criminals, hackers, or just anti-social (and possibly dangerous) misfits. If I was just coming to the point of realising my AS now, I think I’d still be reluctant to accept it, and I wonder how many others are too, for the same reason.

So how did I come to accept my AS, in the end? It was a slow process, which involved about two to three years of intense research and reading about autism and Aspergers. But the biggest factor was meeting other autistics - first online, in various forums, then ‘in real life’.

I found them so different to the stereotypes, even to the clinical descriptions I’d read. To my amazement and delight, they defied those stereotypes - many (like me) were female, and/or parents (like me), some were even grandparents. Some were married or in relationships, many had jobs, or were getting an education, or had a variety of keen interests, and most of them weren’t computer geeks either. And so on. They also displayed many qualities we weren’t supposed to have - caring, friendliness, empathy, a sense of humour, even the ability for sarcasm and irony. I felt instantly at home with them, and to see myself and all my quirks reflected in others, for the first time ever, was mind-blowing, not to mention a huge relief. Finally, here were people I could identify with, connect with, share the deepest part of my Self with. Before discovering my Aspergers, I’d suffered for years from extremely low self-esteem.

But I could see these people were ‘like me’ and yet they were definitely not horrible people, or ‘retards’, or ‘weirdos’, or any of the things I’d been led to believe.

A deeply wounded part of me began to heal - and continues to do so today, with the help and support of my fellow ‘aspies’.

I’ve also come to realise there is a difference between a ‘label’ and an ‘identity’. A label is what others stick on you. An identity is what you form for yourself. I understand why some resist the autistic label, but sometimes you have to accept that label, before an identity can form. That is how it was for me. Over the last few years, I’ve come to not only accept but embrace my autism/Aspergers, and form a positive identity based around that. But I had to accept the label first, however tentatively, before I had the courage to reach out to others on the spectrum. I still have no formal diagnosis, largely because of lack of funds, but I am in no doubt I am an aspie. My friends have done that for me, and I owe them a tremendous debt of gratitude.

I do what I can to pass that on to others ‘coming out’ now.

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And this capacity for community amongst autistics is not just for adults either. I have heard of, or seen, even fairly young autistic kids boosted by meeting other autistic kids and/or adults. It’s a lonely world out there for those of us on the spectrum, and from the age we first begin to realise this, we need the support of our true peers. No therapy or counselling or social skills program or the like can really do what that one simple thing can do.

The world largely continues to foster (and fester in) a mire of negative and largely wrong attitudes about and towards people with autism and Aspergers. Without support, and most crucially support from our peers, we will founder in that mire, and be lost. It is my most profound wish to see all autistics get that support, and go on to form a positive self-identity. Kia kaha.

IDENTIFYING AUTISM: LIMITING OR LIBERATING?

By Dr. Ava Ruth Barker

Note: ‘autism’ and ‘autistic’ in this article refer to the whole autism spectrum, including Asperger’s.

A common barrier to seeking or making an autism diagnosis, is concern about the stigma of a label, as I have encountered from diverse perspectives over my decades of giving and interpreting autism diagnoses, receiving my own, and accompanying others as they discover their autistic identity within the autistic community. Unfortunately the reality for undiagnosed autistics is that today’s society usually ‘labels’ them anyway - if not with a formal autism diagnosis, or self-identifying via the autistic community, then with misdiagnoses or moral labels.

Let’s take a closer look.

Most undiagnosed autistics are already burdened with moral labels: weirdo, stupid, lazy, rude, arrogant, selfish, control-freak, over-anxious etc. Witnesses to our social blunders, disbelieving anyone could be so ignorant of basic social know-how while so capable in other areas of life, assume we’re either being deliberately difficult, or just don’t care. “Just try harder” we’re told, when we’re already trying our utmost. Or “Just relax, be yourself” – but ‘being ourselves’ brings even more criticism. We take this to heart, going all-out to change these alleged character defects – unsuccessfully, given such labels are usually inaccurate and miss our core issues.

The outcome of a diagnostic assessment for an undiagnosed autistic might be a professional label of autism spectrum disorder (ASD), a misdiagnosis,

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or no diagnosis at all (missed diagnosis), this last often bringing further moral judgments: An adult seeking assessment might be labeled malingerer or hypochondriac, while a parent seeking diagnosis for their child might be labeled an inadequate parent. I have detailed elsewhere (1, 2) tips on navigating the diagnostic process, the many developmental or mental health conditions an autistic might be misdiagnosed with, a helpful approach for those dismissed as having ‘autistic traits’ but not ASD, and how such missed diagnosis or misdiagnosis can occur. For instance only the ‘outer layers’ of an individual’s issues and coping strategies may be seen, not their underlying core autistic profile.

While professional labels are products of the ‘biomedical deficit model’ (1), an alternative view is the social model, which considers a ‘condition’ only becomes ‘disability’ because of society’s current response to it. Thus for autism spectrum conditions “AS is a neurological difference that often turns clinical in a culture that doesn’t value AS strengths” (3, page xix). The medical and social models are not necessarily mutually exclusive - perhaps “the truth … lies between the extremes: There are both intrinsically disabling factors in autism, and aspects of atypical individuality that are disabling primarily because society devalues them or fails to accommodate them” (4, page148). The umbrella term ‘neurodiversity’ includes autism as one of a cluster of conditions where the brain is considered ‘differently wired’ compared to the NT (neurotypical) brain, and where each difference (such as autistic focus on details) could be viewed as either advantage

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or disadvantage, healthy or pathological, depending on the context and perspective. A simple shift of perspective can show being autistic as an advantage, and neurotypical a pathology. Look how ‘Neurotypical Syndrome’ is formulated as a disorder on one website (5); and how Carol Gray and Tony Attwood reframe the ‘diagnostic criteria for Asperger’s Disorder’ as the ‘discovery criteria for aspie’ (6), defined not by a ‘triad of deficits,’ but by strengths.

Those on the spectrum often use informal self-labels such as ‘aspie’ / ‘spectrumite’ / ‘autist’: as individual preferences vary, having others assign such labels to an individual or group may be unwelcome. Within the autistic community, autism is commonly considered a cultural difference, with membership defined not by professional diagnosis but by the ‘ethnicity model’: one belongs to the culture concerned, if one identifies with that culture and is accepted by that culture as belonging. Accordingly, the autistic community label ‘AC’ embraces both autistics (those with a formal diagnosis anywhere along the autism spectrum) and ‘cousins’ (those with autistic features but no formal diagnosis, who are ‘self-diagnosed peer-confirmed’ i.e. their self-diagnosis has been validated by autistic peers). Thus, the autistic community can be a place of validation and welcome for not only the formally diagnosed, but also those autistics who’ve ‘fallen through the cracks’ of the professional system.

Enough of ‘labels’ - I would urge a shift in thinking around diagnoses from ‘labels’ to ‘sign-posts’. While the word ‘label’ suggests a fixed, limiting concept, a ‘sign-post’ helps find one’s way along a journey - a dynamic process, rich in future possibilities.

A diagnosis / identity that finally ‘fits’ helps us not only make sense of the many perplexing situations that have happened in our lives to date, but also make more realistic plans from getting to know our strengths and challenges, which traits can be modified, which compensated for, and which must be accepted and lived with. Autistic adults call such approaches (2) “working with autism, instead of against it” (Jim Sinclair) - “Instead of failing to succeed at what you’re not, you can start learning how to succeed at what you are” (Jane Meyerding). Ideas about how to do this are brainstormed within the autistic community, and available in the growing literature by adults on the spectrum: books for not only autistic peers but also

parents, professionals and the wider public. Insights and strategies from the autistic community include aspects of autism as yet little explored in professional literature – like the three days we spent brainstorming ‘inertia’ at one of the annual ‘Autscape’ conferences (www.autscape.org). For the newly diagnosed adult, the autistic community can be a place to share with like-minded peers, and to learn from those autistic trailblazers and community-builders who forged a path towards autistic self-determination and autistic community in an era when such goals seemed ludicrous.

Conversely, even a correct diagnosis of autism may resound like a death-sentence, if not accompanied by a positive model and supports to work constructively through the inevitable adjustment process following diagnosis (7, 8): the stages of coming to terms with the diagnosis, disclosure, finding helpful solutions and strategies, etc. Overly-restrictive advice needlessly shatters dreams (careers, relationships, parenthood etc.) and shackles the newly diagnosed to outdated stereotypes (‘lacking imagination, feelings and empathy’ etc.), while haphazard disclosure of the diagnosis brings them face-to-face with, and unprepared for, the misunderstanding and stigma around autism that still persist in society. The book Aspies on Mental Health (9) – recommended reading for all professionals in autism or mental health fields – shows, through often-harrowing personal accounts, the links between how autism diagnosis and support are provided, the misdiagnosis that’s prevalent, and autistic mental health.

Such extremes in the process and outcome of identifying / diagnosing autism were among the drivers behind ASK Trust (www.asknz.net) producing the booklet featured in this Journal, through which autistic peers can welcome the newly diagnosed to their place on the spectrum in a positive and informative way.

It takes courage for a parent or individual to consider seeking a diagnosis or self-identifying as autistic.

Standing vulnerable at a crucial cross-road, how they are met by professionals, support people and wider society can make a profound difference. Will the process limit or liberate? Be experienced like a deathsentence or a life-affirming key? My hope is that one day, all can experience what one woman (8) expressed after being diagnosed in her fifties: “The deepest

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hunger of the human heart is to feel understood, valued and respected. My recent [autism spectrum] diagnosis has helped me to feel these three things for myself, and about myself, which I had never been able to before.”

References: 1. Baker, A. Navigating the pitfalls of ASD diagnosis and support; 2011 www.avaruthbaker.com 2. Baker, A. Identifying autism spectrum conditions: What does it matter?; 2008 www.avaruthbaker. com 3. Miller, J. K. (ed). Women from another planet?; Dancing Mind Press; 2003 4. Schwartz, P. Building alliances. In S. Shore (Ed.).

Ask and tell: Self-advocacy and disclosure for people on the autism spectrum; Autism Asperger Publishing Company; 2004

5. Institute for the Study of the Neurologically Typical. Neurotypical Syndrome; http://isnt. autistics.org 6. Gray, C. and Attwood, T. The discovery of “Aspie” criteria by Attwood and Gray; The Morning News 11; 1998 7. ASK Trust Beyond diagnosis: Welcome to our spectrum; 2013 www.altogetherautism.org.nz/file/ Conference/Presentations/w1_ask_panel.pdf 8. Baker, A. Invisible at the end of the spectrum; 2004. www.avaruthbaker.com 9. Beardon, Luke and Worton, Dean (Eds). Aspies on mental health: Speaking for ourselves; Jessica Kingsley Publishers; 2011

DIAGNOSIS AND IDENTITY

By Leaupepe Taimaaiono Liz Tupua Talaepa.

My husband and I are Samoan and we have 3 sons; ages 20, 15 and 14. Our 2 youngest boys are on the spectrum – our 15 year old was diagnosed at 2 ½ with Autism and our 14 year old with Pervasive Developmental Disorder Not Otherwise Specified (‘PDDNOS’).

When we were first diagnosed with Autism – and I use the first personal pronoun plural because it affected us all - it hit us like a lightning bolt. Our only concern had been that we were not yet verbal. All the other signs such as the need to line up our shoes, play with our shadow, repeatedly run back and forth parallel to our fence and the lack of emotional connection were unremarkable. To us that is.

The early years following diagnosis were full on for my husband and me as we grappled with what this meant for us. I grieved a day or two for the cancelled trip to ‘Italy’ and the crash landing in ‘Holland’. Then I set out to ‘buy a new guidebook………. learn a whole new language’ and along the way met ‘a whole new group of people.’ Choice/sequence boards and social stories were some of the visual strategies we used to calm the storm we were exposed to at the time. This took a toll on our marriage but we survived the battering and the outcome was that he started school with a repertoire of phrases, out of nappies and no longer a runner.

The last year or two have been particularly challenging for our family and 15 year old with the

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loss of his grandmother and the onset of puberty.

Consequently, we have had concerns with his mental health and behaviour. The season of rough weather has returned, with him experiencing some severe lows and emotional dysregulation, so we have had to resort to the strategies of the past to minimise anxiety, as well as depend on the agencies and family support that have been there from the beginning. Thankfully, the storm is abating and he appears more relaxed and confident.

He is enjoying a modified programme at high school which includes some correspondence work in our Learning Support Centre. While he attends only PE right now, we hope he may agree to a few more classes next term. He is interested in gaming and, although he doesn’t think so, he has some artistic flair so we are exploring possibilities and drawing on contacts we have in Media Design within our networks. Currently he is accessing support through mentoring/counselling, playing basketball with Special Olympics and he has recently joined PHAB, a support group for adolescents with differing abilities.

Autism has been a part of us for over 13 years now.

While the journey has been lonely at times and has left scars, it has made us stronger. We take nothing for granted, we celebrate the small things, we have a higher threshold for forgiveness and we thank God, in our early 50s now, that we landed in Emily Perl Kingsley’s ‘….Holland’.

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NEW ASD DIAGNOSTIC PROCESSES AND TOOLS FOR TEENS AND ADULTS

By Catherine Trezona MA Researcher - Altogether Autism The New Zealand Autism Spectrum Guideline (2008) (the Guideline) recommends that a comprehensive assessment for the diagnosis of ASD will include validated diagnostic instruments administered by expert clinicians.

The most commonly used diagnostic tools in New Zealand are the ADI-R (Autism Diagnostic Interview-Revised) and ADOS (Autism diagnostic Observation Schedule).

ADI-R is a semi-structured interview with demonstrated validity when administered by an experienced clinician. ADOS is considered to be the ‘gold standard’ for observational assessment of autism spectrum disorders. The ADI-R and ADOS were reviewed by the New Zealand Living Guidelines Group, a small group of ASD experts who are responsible for reviewing evidence that relates to the Guideline, and reporting on the changes necessary to keep the Guideline up-to-date. Their 2011 review of diagnostic instruments for ASD can be located at http://www.health.govt.nz/publication/ asd-diagnostic-instruments-review.

Since that review, two new tests that might be used for teens and adults have been developed. Each of these has demonstrated validity in preliminary evaluations. The first is a screening tool and the second is an assessment tool. A brief review follows.

RAADS-14 Screen is a new screening tool to facilitate the diagnosis of autism in adults without intellectual disability (ID). It was developed by Associate Professor Susanne Bejerot of the Department of Clinical Neuroscience at Sweden’s Karolinska Institutet, and is intended as a tool for screening adult psychiatric outpatients for an unrecognized ASD, where comorbidities may confuse the diagnosis. RAADS-14 Screen simplified the existing 80 item self-reporting instrument, RAADS-R (Ritvo Autism and Asperger Diagnostic Scale-Revised),

and includes an online test that can be located at http://psychcentral.com/quizzes/autism-quiz.htm.

An evaluation of RAADS-14 Screen was published by the test’s designers in Molecular Autism (Eriksson, Anderson & Bejerot, 2013). The participants of the study were 135 adults with ASD and no intellectual Disability, 508 subjects with some form of psychiatric disorder and 590 control subjects with no diagnosed ASD or psychiatric disorder. This study was unique in that participants with ASD were compared with those with some form of psychiatric disorder, including ADHD and schizophrenia. Participants were scored across three domains: mentalizing deficits, social anxiety and sensory sensitivities. The results as reported showed it is possible to clearly differentiate between those with ASD and those with psychiatric disorders, with a median score of 32 for ASD, 15 for ADHD, and 11 for other psychiatric disorders. The psychometric properties of the scale were shown to be satisfactory (Eriksson, Anderson, & Bejerot, 2013).

AMSE: Autism Mental Status Exam was intended to provide brief and streamlined observational assessment for ASD in under-resourced clinical settings where the gold standard diagnostic assessment is not feasible. It was developed over three years at the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai in New York City. ASME involves an eight item observational assessment and has been described as the first mental status exam that operationalizes the direct observation of social, communicative, and behavioral functioning.

Initial validation data published in the Journal of Autism and Developmental Disorders in 2012 included an unstratified sample of persons from age 18 months through 38 years and indicated excellent classification accuracy (Grodberg, Weinger, Kolevzon, Soorya, & Buxbaum, 2012). A later study investigated

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the sensitivity and specificity of ASME scores using DSM-5 criteria for ASD in high risk verbally fluent adults, with the high clinical utility suggesting ASME may offer a streamlined diagnostic assessment tool to support clinical diagnosis (Grodberg et al., 2014).

References Eri ksson, J.M., Anderson, L.M.J., & Bejerot, S. (2013).

RAADS-14 Screen: Validity of a screening tool for autism spectrum disorder in an adult psychiatric population. Molecular Autism, 4(49), 1-11. doi: 10.1186/2040-2392-4-49. Retrieved from www.molecularautism.com/content/4/1/49

Gro dberg, D., Weinger, P.M, Halpern, D., Parides, M., Kolevzon, A. & Buxbaum, J.D. (2014). The autism mental status exam: Sensitivity and specificity using DSM-5 criteria for autism spectrum disorder in verbally fluent adults. Journal of Autism and Developmental Disorders, 44(3), 609-14. doi 10.1007/s10803-013-1917-5.

Gro dberg, D., Weinger, P.M, Kolevzon, A., Soorya, L. & Buxbaum, J.D. (2012). Brief report: The Autism Mental Health Status Examination: Development of a brief autism focused exam. Journal of Autism and Developmental Disorders, 42(3): 455-459. doi:10.1007/s10803-011-1255-4.

ULTIMATELY WE JUST WANTED OUR CHILD TO BE HAPPY

By Christina Slade

When we decided to have a baby, we had a fair idea of how we wanted to raise him. We wanted our child to feel loved, accepted and valued. We wanted to be supportive parents, let our child discover the world around him through his own eyes and follow his own dreams.

Ultimately we just wanted our child to be happy.

Even though our child, Cory, has now received a diagnosis of Autism Spectrum Disorder, those plans have not changed for us. Instinctively, we knew there was something up with Cory’s development and it was not long after his first birthday we booked an appointment at Plunket.

The second blow - his hearing was perfect. I broke down. I know how stupid and selfish that must sound but it was a huge kick in the guts for me because it was at that moment when I actually realised something big was going on with my baby.... and I had no idea how to help him

I had my suspicions about Autism but I was honestly expecting them to tell me that I was just being a paranoid first time mum and to chill out a little bit.

Waiting for a diagnosis was the hardest part; I did not cope well. While the CDC had placed Cory on the waiting list it was still going to be another 3-6 months before we could see them. I was a mess, every day just turned into an emotional blur. I feel now that I lost valuable time just being a Mum to Cory and spent far too much time upset and focusing on all the negatives about his potential Autism diagnosis. I couldn’t look at Cory without seeing the characteristics of autism, the things I desperately didn’t want to see. I was watching his skills regress and there was nothing I could do to stop it. I would look at him and cry, my poor baby – what have I done wrong to make you this way??

To my surprise and horror the Plunket nurse agreed with our concerns and we were referred to the Child Development Centre at Waikato Hospital. That Plunket appointment was the first blow for me.

We were also advised to get Cory’s hearing tested a week after seeing Plunket. So I held on to that and managed to convince myself Cory may be deaf.

I went to that appointment quite confident that we would get some answers to why Cory wasn’t talking or wouldn’t respond to us. We could deal with a deaf child, we could learn sign language and he would have great support.

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ALTOGETHER AUTISM JOURNAL • WINTER 2014

What I experienced was completely normal but it wasn’t healthy, or helpful. I definitely went through overwhelming grief during that time before the diagnosis.

The stages of grief are very real and it was difficult because it wasn’t just us as parents who were grieving, it was also our extended family and friends.

We were dealing with supportive family and friends, some in shock, and others who were in denial. We had to try and battle our own very raw emotions and also be mindful of the way others were feeling, it was in no way just affecting us as parents.

When it came time for the appointment at the CDC we went in prepared for what they were going to say, and it didn’t take long until we were told it was Autism Spectrum Disorder. I said ok, we can deal with that – and burst into tears. I cried because my fears were confirmed but they were also tears of extreme relief. Relief because there was now a reason my son was acting the way he was, and a reason his skills had regressed. We now had a name, and something we could work with. It was great a comfort to us to be told that it wasn’t anything we had done wrong as parents.

At the time, my fears about a diagnosis of Autism Spectrum Disorder meant life would never be how we had planned when we decided to have a child.

Everything was daunting and just like that everything had changed for us.

In the months while we waited we had read some heartbreaking articles, books, internet blogs and myths about autism and had an incredibly miserable idea of what we could expect.... Cory would never love us. Cory would never want to interact with us and seek us out for fun or comfort. He would struggle in his life and never become fully independent. Our marriage would crumble and end in a bitter divorce.

The list went on and on, very clear preordained plans for the life of our autistic child and our family.

The reality is we have a very cuddly, happy and loving son. Cory’s hugs, smiles and love are genuine. Although he is currently non-verbal he is very much able to ‘tell us’ that he loves us and at the same time is able to clearly convey that we are the worst parents in the world (oh how typical!)

Now, Cory’s diagnosis is only a few words on a piece of paper that gives us access to support and services. That is all.

We have decided that we won’t let the diagnosis define Cory or our family unit. Cory will become the person he is destined to be, not the person society expects him to be. We are going to tackle autism with a positive attitude; you can’t fight what you can’t change. Parents or professionals can’t possibly predict what a child can accomplish. No one can predetermine a child’s potential. No one can envisage what a child’s personality will be or the strength of their determination. There is no prognosis for how an autistic child is going to live his life or how successful he is going to be.

Cory has grown and developed so much in the past few years and his progress has been a magical thing to witness. He has taught us to slow down, relax, and enjoy the world that surrounds us. Because of him we see colours in raindrops now; I had never noticed them before.

I think sometimes as parents we tend to expect professionals to be our own fortune telling gods.

They are only human, just like us. They may not have all the answers and sometimes they may share information we simply do not want to hear. Give them a break sometimes...They are doing the best they can. Autism spectrum disorder is a mysterious and complex condition, the spectrum is immense. As the saying goes, if you meet one child with autism, you have only met one child with autism.

But at the same time, as parents, we have the right to question everything. We have the right to decide how we want to raise our child. I will never let any professional decide how Cory’s life will turn out; it would be presumptuous for them to even try.

None of our plans have changed from when we decided to have a child; we are just doing things a little differently...

Our little man, Cory, is very much loved, accepted, valued and happy. We are so very proud of him.We hope sharing our experience of Cory’s diagnosis might be useful for other families and the professionals that are dealing with them during such an emotional time.

He is very bright, incredibly cheeky with a very playful sense of humour. He does play with us in his own way and he is becoming a little boy with a big attitude and a whole heap of confidence.

ALTOGETHER AUTISM JOURNAL • WINTER 2014

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