Autism: A Journey of Discovery as a Parent and Psychologist

Raelene Dundon is a parent, a psychologist and the author of  Talking with Your Child about Their Autism Diagnosis: A Guide for Parents. In this piece, Raelene tells her personal story of how she came to write this book, and what she hopes it will achieve. You can also read an edited extract from the book on our blog, here

Looking back on where this book really started, I would have to say that it was 10 years in the making. It was about 10 years ago that my son Aaron was diagnosed with Autism, and I was launched into a world of speech therapy, behavioural intervention, visual supports and questions – lots of questions.

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I was already a registered Psychologist at the time, and had been working with children with Autism and other developmental disabilities in an early intervention program in Melbourne, Australia. While with hindsight I can honestly say that my experience of being a parent to a child with Autism has been a challenging but overwhelmingly positive one, I can still remember the moment I was told that Aaron had Autism and my reaction was one I have since seen many other parents go through – fear, sadness, and confusion.

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How To Tell Your Child They Have Autism

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New book Talking With Your Child About Their Autism Diagnosis is a guide to aid discussion and understanding between parents and children. In this blog, edited and adapted from Chapter 3 of the book, author Raelene Dundon breaks down the reasons why she recommends being open and honest with your child about autism. 

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Is it important to tell a child they have autism? Do they need to know? Will they figure it out for themselves? What does the future look like if they don’t know?

These are questions that parents of children with autism may ask themselves many times from the time their child receives their diagnosis, and the answer is not a straightforward one. Depending on who you talk to, there are different opinions on whether it is necessary to tell your child about their autism or not.

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Looking after the Mental Health of Girls with Autism

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support is the first book to look specifically at how mental health issues relate to girls and young women with autism, covering theory, research and tailored interventions for support.

In this extract, taken from Chapter 6 on Anxiety and Depression, author Dr Judy Eaton explores the results of a number of studies into anxious behaviour in girls and young women on the autistic spectrum. 

Evidence suggests that an estimated 40 per cent of individuals on the autism spectrum will suffer from high levels of anxiety (Van Steensel, Bögels and Perrin 2011). Clinical experience would suggest that this figure is likely to be higher, particularly amongst those with the pathological (or extreme) demand avoidance profile. In an earlier version of the DSM, DSM-III (APA 1980), ‘sudden excessive anxiety’ and ‘unexplained panic attacks’ were included amongst the core criteria for a diagnosis of autism. However, subsequent versions of the DSM (IV and V) do not include this. The reason for this is not entirely clear. Hallett et al. (2013) cite the meta-analysis by White et al. (2009) which found that between 11 per cent and 84 per cent of children with a diagnosis of autism display anxiety. Of the 31 studies analysed 30 per cent were diagnosed with specific phobias, 17 per cent had obsessive compulsive disorder, 17 per cent had social anxiety and 15 per cent reported features of ‘generalised’ anxiety. Their results suggested that children with autism were twice as likely to develop anxiety disorders compared with their neuro-typical peers. High levels of anxiety have a negative impact upon education, social relationships and social participation and on other members of the immediate family group (Reaven 2011). There is also an increased likelihood that these anxiety disorders will persist into adulthood.

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How important is empathy within our care system?

Frightened

Bo Hejlskov Elvén is a Clinical Psychologist, and author of Frightened, Disturbed, Dangerous?, Disruptive, Stubborn, Out of Control?, Confused, Angry, Anxious? and Sulky, Rowdy, Rude?, based in Sweden. He is an independent consultant and lecturer on autism and challenging behaviour, and an accredited Studio III trainer. In 2009, he was awarded the Puzzle Piece of the Year prize by the Swedish Autism Society for his lecturing and counselling on challenging behaviour. 

Frightened, Disturbed, Dangerous? Those words are often used to describe people in psychiatric care. Historically, schizophrenia is one of our oldest diagnoses still in use. Our oldest diagnoses describe people whose behaviour was unpredictable and clearly different than that of other people. Today, we still see descriptions of people with psychiatric conditions described as disturbed and dangerous despite all the knowledge we have contradicting those descriptions. The words we use to describe people affect the way we think about them and our methods for working with them. If we believe that a person is dangerous, we will keep our distance and even react faster to the person’s behaviour. We are also more prone to react with force.

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Shibley Rahman talks about his book, Living Better with Dementia

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Identifying current global policy challenges for living well with dementia, this book tackles controversial topics at the forefront of public and political debate, and highlights pockets of innovation and good practice from around the world to inform practical solutions for living well with dementia in the future. We talked to Dr Rahman about the book and his thoughts on the current process of dementia diagnosis. 

What motivated you to write Living Better with Dementia?

The name of the only national dementia strategy for England so far was ‘Living well with dementia’. This name is problematic, as it potentially sets people up to fail. What if a person has a bad day? We’re all entitled to have a bad day.

The actual strategy expired in 2014, exactly five years after it was launched by a previous government in 2009. I wanted to keep with the ethos that it is possible to aspire to live as well as possible with dementia. The prism of long term conditions suits people with dementia much better than the approach which relies solely on drug treatments.

The title of the book, Living Better with Dementia, is in fact from Chris Roberts, living with mixed dementia of the Alzheimer type and vascular type. I am honoured that Chris wrote one of the forewords. Kate Swaffer, Chair of Dementia Alliance International, wrote the main foreword.

There has to be an alignment of rhetoric and reality. That’s why I respect the work of Beth Britton who wrote the final foreword. Beth has an intimate lived experience of dementia from family, and professional experience in how this impacts on actual care. The topics of my book give a realistic state-of-the-art exploration of key themes in wellbeing in dementia, not entrenched in dogma, but which promote awareness and education. Continue reading

Read an extract from Very Late Diagnosis of Asperger Syndrome (Autism Spectrum Disorder)

 

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In this extract from Very Late Diagnosis of Asperger Syndrome author Philip Wylie  talks about the importance of getting the timing, manner of communication and choice of confidant right when revealing that you have been diagnosed with ASD.

Read the extract now

You can find out more about the book, read reviews and order your copy here.

Alenka Klemenc – my story

Klemenc, AlenkaAlenka Klemenc is a psychologist and parent of a child with an Autism Spectrum Disorder. Alenka explains how she adjusted to parenting a child with ASD, including the benefits of receiving a supportive diagnosis.

Since his birth, I began to notice that my child was different from the other children. My husband and I had great difficulties in attempting to create a rhythm of feeding and sleeping. He was crying a great deal and it seemed that everything disturbed him. He was often restless and gave the impression of being anxious; it was very difficult to comfort him. Even in his first year, he was very disturbed by physical stimuli, particularly sounds. He also rejected people and physical contact. I remember constantly being in search of an excuse, when somebody wanted to take a peek in the stroller or attempted to talk with him. His most common response was to burst into tears and turn away. I, a young mom, hastened with “Sorry, he just woke up,” or “Sorry, he’s not feeling well,” which was, of course, not true.

Most of the time, I felt like a complete failure as a mother. Our days were filled with effort upon effort, uneasiness and exhaustion. I simply could not establish a harmonious relationship with my child no matter what I did; there was always something wrong. Wherever we went and whatever we did, our outings, visits and activities constantly ended in tears and restlessness, which I was unable to understand at the time.

As a toddler, he was more interested in the physical world around him than in other children and people in general; he would be taken with stones, water pipes, running water. Entering nursery was arduous and long; he rejected it very openly. After a while, when she got to know my son better, a carer in the nursery once remarked, “Your son is, well, somewhat different”. She was very careful in choosing words that would not offend me. I, on the other hand, felt great relief in that finally someone from the outside confirmed what I had been suspecting for some time.

When he was about three, his love for the routine and rituals became very apparent. He wanted everything to be the same every day, in the same order and in the same manner. Whenever there was a change (for example, putting on his trousers first and then the T-shirt instead of the usual T-shirt-first-trousers-second routine), there would be no end to his crying and screaming. We had to undress, put the pyjama back on and start from the beginning; otherwise it was a ‘mistake’ in his mind. Sometimes I knew where the ‘mistake’ occurred, but very often I did not. We would be walking down the street and, all of a sudden, he would start screaming “Wrong, wrong!” I was clueless as to what was wrong. When this happened, we sometimes retraced our steps to the point when the mistake occurred and then continued, but sometimes there was simply no time for this. In those instances, the crying and screaming went on and on. He would cry for several hours, which was utterly exhausting for both me and my husband.

At every stage of his life, my son had certain activities or objects in which he took a consuming interest (water, level-crossing barriers, tunnels). He could watch or talk about them for hours on end. In the level-crossing barrier period, for example, he knew every level-crossing barrier in our vicinity, talked about them to the exclusion of everything else, regardless of whether other people were interested or not. He had a great difficulty in picking up on when his talking became excessive; he was very loud and dominant. He also generally preferred adult company to that of his peers; he always found children uninteresting and unpredictable.

When he was five years old and still not properly adapted to the child care centre and his peers, I began realizing that we needed to find a specialist who could help us. My husband and I did have a rudimentary knowledge of the autism spectrum disorders, but we still had many questions and worries. Our son was about to start school and we wanted it to be a sort of a new beginning for him, but also for us. We wanted him to be properly diagnosed and, through that, be able to properly adapt and be adapted to. We also wished that the adaptations would not be regarded as whims of over-protective parents (as we had heard so many times), but rather as recommendations, of an expert, as to how we could help the child in the most effective way, but also help ourselves to lead a more peaceful life.

The diagnostic process was a process of relief. It was, on the other hand, also a very emotionally taxing time, because we had to face the finality of our child having an autism spectrum disorder that would stay with him, in one form or another, for the rest of his life. We were seeing a special education worker until he entered school, after which my son was officially diagnosed, while my husband and I were equipped with skills for raising such a child as well as skills for taking care and protecting ourselves from constant exhaustion.

The period before school was for me also a time of a deep and gradual internal process. As a young mom, I naturally longed to connect with my child, to be able to calm his anxiety and help him connect with the world around him. I patiently tried to help him not reject physical contact, with my body and emotions I tried to understand the source of his anxiety, maintained contact with him even when his distress seemed almost intolerable. All this effort exhausted me to the point of falling ill. But it was this effort as well as my deep love of my child that allowed me to inch my way towards a better understanding of him, towards an understanding ‘from within’. When the diagnosis was established and before I fell ill, I felt the need to put the child’s inner world that I carried within me in writing. It took me no more than two hours to describe, from the point of view of the child, how he experienced the world, how he felt and thought and how we, the adults, could help him.

The text was initially meant for his first-grade teacher, to help her to better understand, accept, care for and help my son. When it fell into the hands of some of my friends and fellow psychologists, and inspired a friend to draw illustrations to it, however, suggestions were soon made for the text to reach an audience wider than the first-grade teacher. I finally decided to publish it in a book.

The long years of efforts pKlemenc - what is it like - pic252aid off in my family and the school really did bring about a new beginning. My son entered a school that takes his particularities seriously and puts great effort into accepting him. As a consequence, he began taking an interest in his classmates, taking part in their games and activities, he gradually learned to defend himself from the disturbing stimuli and to accept that things in life change rather than follow the same course every day. In school he is monitored by a special education worker and his progress is immense. It is best visible in our life as a family, which has become much calmer and relaxed; it even happens that he calms or entertains his younger brothers. He has fewer fears, he developed a special sense of humour and his great wish is to become a physicist.

It is often said that children with autism spectrum disorders are unfeeling and that their interior is empty or incomprehensible, but this is not true. It is simply harder to find the key to their interior and harder to persist at their side. They can learn a great deal and, provided with a steady support, they can come to have a good understanding of the world around them and be able to share in the diversity of relationships. Step by step and success by success, they become more and more confident and creative, and see themselves as interesting, accepted and loved.

Alenka Klemenc is the author of What Is It Like To Be Me? 2013 published by Jessica Kingsley Publishers.

Sally Kirk on Hope for the Spectrum of Autism

Sally Kirk and son

Sally Kirk is the mother of three boys, one of whom has Asperger’s Syndrome. She is also the author of forthcoming Hope for the Spectrum of Autism, published by Jessica Kingsley Publishers.

How did you feel when you received your son’s diagnosis of Asperger’s Syndrome?

I felt a great sense of relief since I had been struggling in vain to understand Will in terms of the ADHD diagnosis he’d received 3 years earlier. Little of what I read about ADHD helped us cope with our most painful problems – Will’s dwindling social skills and increasingly explosive anxiety. The Asperger’s diagnosis was a real turning point for us. For it fit Will like his shadow. Finally I knew what we were really dealing with. Learning about it helped me to understand Will better. Understanding was transforming. For when I saw the world as he saw it, his behaviors made perfect sense. The blessing of understanding was that it led to empathy and compassion. It melted frustration and exasperation into genuine respect, whole-hearted support and even admiration. It helped me to become much more effective at helping him. The impact such understanding made on our relationship was profound. It put us on the same team – working together to face the challenges. It made all the difference in the world.

What are the main challenges you have faced since receiving Will’s diagnosis?

Before Will’s ASD behaviors were alleviated by biomedical intervention, I struggled significantly with Will’s unpredictable, explosive anxiety. Public displays outside the immediate family were particularly stressful. I also grappled with an unrelenting fear that Will would never be able to lead a normal, happy life or to be independent. At times Will’s problems also put a heavy strain on my relationship with my husband. For we often had opposing opinions about how to respond to Will’s woes. Thankfully, as the healing of biomedical intervention has given Will his life back, my husband and I have gotten ours back too.

What are your hopes for the future of autism?

My hope is that mainstream medicine will come to recognize that autism is the result of underlying physical problems in body chemistry, the digestive tract and the immune system. And that when these physical problems are treated, brain function and autistic behaviors can improve. Thus enlightened, mainstream medicine would become a powerful force to help autistic children worldwide so they could enjoy profound healing and significant reductions in autistic behaviors. It is also my hope that research dollars currently funneled so heavily into efforts in genetics will turn instead to crucial research in body chemistry, the digestive tract, and the immune system. We need practical research that will add to our knowledge of safe and effective treatments today, not 20 years from now. Research is also needed to expand our understanding of the root causes that lead to ASDs so we can prevent them in the first place. The Autism Research Institute (www.autism.com) is superb at identifying and funding these types of research.

Who or what inspires you most?

I am most inspired by Jaquelyn McCandless, MD, a doctor of biomedical intervention and author of Children with Starving Brains. On the verge of retiring from private practice in 1996, Dr. McCandless was told her granddaughter, Chelsey, had an incurable disorder, autism. With the unquenchable soul of a mother/grandmother, Dr. McCandless dug deep into ways to help Chelsey. The most rewarding of her finds was biomedical intervention. Though she could have used it to help only Chelsey, she didn’t. Rather, she transformed her practice by diving headlong into helping ASD children heal through biomedical intervention. She also conducted clinical research, wrote articles, spoke at conferences, trained other doctors, and even squeezed in time to pen Children with Starving Brains. She’s a talented overachiever on a mission from the very heart of autism’s pain. And though Dr. McCandless has helped innumerable children to improve or to lose their diagnosis, Chelsey herself – though better – remains autistic. Whereas some might be discouraged, Dr. McCandless continues her relentless, energetic search for answers and improved biomedical treatments. She inspires me as a symbol of unselfish giving, tenacity, resilience and hope.

What is your favorite book or film?

Before Will’s anxiety gradually faded away with biomedical intervention, my most indispensable book was Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns by Brenda Smith Myles and Jack Southwick. It was my anxiety-meltdown bible for years. But now my favorite book is the intriguing autobiography Up from Slavery by Booker T. Washington. The author was a slave until age 9 when he was freed by Abraham Lincoln. His got a very rough start in life for a person who went on to become a tremendous educator and orator credited with helping his race to recover from oppression. Booker T. Washington wrote that success should not to be measured by the position one reaches in life, but rather by the obstacles one overcomes while trying to succeed. Our children with ASDs have certainly gotten a rough start in life. Their obstacles at times seem insurmountable. Yet I have found that biomedical intervention can help to overcome those obstacles and recover (or improve) many children from the oppression of autism. Many can indeed live rewarding, successful lives if given the right kind of help – biomedical intervention, therapy and special education.

Copyright © Jessica Kingsley Publishers 2008

Wendy Lawson: “they need us because we are good at the ‘black & white’ stuff.”

Wendy Lawson

JKP author Wendy Lawson is a writer, poet and adult educator, regularly speaking at Autism events around the world and sharing her knowledge, understanding and experience of autistic spectrum conditions. She is currently working towards a PhD.

When were you diagnosed with Asperger Syndrome and how did you react?

When I was 42 yrs. old (in 1994). at first I was upset, then I did some research and discovered what being on the Autistic Spectrum meant. I related well to what I read and this gave me relief because at last I had an explanation that made sense of who I am and why I do what I do.

Has the general public’s understanding of autism spectrum conditions improved since you were first diagnosed?

Yes, I believe it has but there is still much work to be done to undo the general ignorance that exists concerning autism.

What do you think are the major challenges we face in making society more inclusive for people on the spectrum?

I think we need to demonstrate to society that we are of value, just the way we are. That we don’t need to change and be more like typical people to be worthwhile. Our value is in being human, and in being different. In general society is good at the grey stuff, but they need us because we are good at the ‘black & white’ stuff. Inclusion is about recognising difference but accommodating it and seeing it as having a place. It’s not about making square pegs fit round holes.

Who or what inspires you?

I am inspired by ‘Life’ and the courage that nature shows us each time she takes a beating. At times Winter brings the cold, damp, harsh reality that death claims all, but, it is defeated everytime time Spring causes a brook to trickle into a river; or a seed grows a new flower; a blackbird lays her eggs and warms her fledglings with soft downy feathers; tadpoles become frogs and the oldest Oak tree spreads her new foliage over the acorns buried beneath her by industrious squirrels. I am also inspired each time a cicada breaks out from it’s darkest years beneath the earth and takes to the trees to dry its wings. Or when a child with autism notices and is happy. I guess I am inspired by courage, displayed by so many against all the odds!

What is your favourite book or film?

I have a few ‘favourites’, some old and well known, others that grow on me after attending to them over time. As a younger person it was: The Water Babies; Ring of Bright Water; The Tolkien Books and The Chronicles of Narnia. As an older person the books by Elizabeth Moon (e.g. The speed of Dark) and Oranges are Not the Only Fruit (by Jennette Winterton). I love the film Happy Feet and I’m generally a person who is very drawn to science fiction (Star Trek; Deep Space Nine… etc).

Copyright © Jessica Kingsley Publishers 2008