The second edition of Olga Bogdashina’s classic book has just been released. The same is entitled «Sensory Perceptual Issues in Autism and Asperger Syndrome- Different Perceptual Worlds». It can be bought from Amazon for $24.95 and has received 5 stars in reviews. I was honored in having been asked to write the preface for the same which I reproduce below.
Olga has been the first person to pay close attention to sensory issues in autism. Reading the book, full of quotes by patients, was a learning experience. It is already a classic in the field and a must read for anybody interested in autism. I have to thank Olga for having the courage to tackle the hard problems. Her foresight was not the result of having stood on the shoulders of giants. This was a field she plowed by herself. This is typical of Olga, challenging herself to do what others have been afraid to pursue. In other books Olga has similarly tackled the hard questions; what is «normal» and «abnormal» in «Edges of the Known World» and concepts of spirituality in «Autism and Spirituality».
The photo was taken from a question and answer session regarding autism with academicians and other government officials in Russia. Olga was seated to my left. It was easy to feel at ease when you have Olga by your side.
Preface
I often tell my fellows that autism is a pervasive developmental disorder because it covers so many different areas of cognition. In order to become proficient in it, you have to learn the whole of psychiatry, e.g. intellectual disability, mood disorders, stereotypies. Yet for autistic individuals with sensory problems the term pervasive acquires a different meaning. It is pervasive because sensory problems are with you every minute of every day. In effect, sensory disorders color all aspects of your life experiences. You can’t shake the ramifications of sensory problems as they mold your behavior, interrupt your sleep, hamper your socialization, shift your attention, and obstruct any attempts at learning. Sensitivity to light, sound, and touch is more debilitating than those disabilities related to social interaction and communication. Indeed, the overwhelming and enduring tidal wave of sensations garnered by a hug may contribute to a ricocheting cascade leading from socialization problems to mood disorders. You can’t afford to socialize while engaging in a hostile environment that assaults your senses.
Sensory disorders in autism are frequently reported but otherwise little understood or appreciated. In this regard, Olga Bogdashina’s book and views antecede the DMS5, the Diagnostic and Statistical Manual fifth edition, on the importance of sensory problems in autism. This book portrays the underlying deficits to sensory problems as aberrations in the cortical circuitry and the interrelated connectivity between brain areas that are themselves molded during brain development. According to Olga, and I readily agree, sensory phenomena in autism have a biological substratum.
Even though the importance of the biomedical dimension is readily gathered from this book, Olga similarly emphasizes the humanistic experience of the individual patient. Patients need to be able to explain their ailments,- you can’t undercut their claims. “Sensory Perceptual Issues in Autism and Asperger Syndrome” creates order out of chaos by emphasizing the subjective statements of individuals with autism. In effect, the book is an invitation to sit and listen to the experiences of persons in the autism spectrum. Dr. Bogdashina stresses the meaning that life experiences provided to the person with autism rather than the perception attached to autistic behaviors by a physician. This is in effect the best framework to understand symptom burden at the level of the individual. As Olga advises, “boundaries of neuroscience are changing as the distinction between sensory and cognitive functions become increasingly unclear”.
One of the salient aspects of this book is the discussion about potential avenues for treatment. Many of these interventions are commonsensical; as Dr. Bogdashina states, “We accept that we cannot cure blindness and we do not waste time and effort trying to teach visually impaired children to recognize colours. We see our task as helping them function using compensatory strategies, and adjusting the environment to make it easier for them to orient in space”. The first step is to identify the underlying cause(s) of sensory problems for each individual. This treatment is individualized and often requires a one-to-one intervention with a therapist wherein patients are kept informed about all aspects of their care. Many of these interventions are approaches to health care that are not currently considered to be part of conventional or mainstream medicine. Successful outcomes of these interventions will show that individuals are calmer, sleep better, exhibit reduced tactile defensiveness, and may lead to reduce dosages of other medications. Moreover, some of these interventions promote the child’s feeling of control over their otherwise pugnacious environment.
Olga Bogdashina is a teacher, lecturer, researcher, and an author of over one dozen books on autism. She has directed a first day center for autistic children in the Ukraine and is the motive force behind the International Autism Institute in Siberia. She is considered a rock star of the special needs education movement in Russia. Moreover she is also a mother of an adult son with autism. In this regard Olga not only understands the scientific literature but also has privileged access to the way an autistic person thinks and behaves the way they do.
There are always two ways to look at things: the non-autistic way and the autistic way. The task for the reader is to understand the second way; to gain understanding by thinking the way an autistic person does. Overall this is an excellent book, a must read for anybody interested in sensory problems and autism.
For the entirety of our waking lives, our senses are bombarded by sensory stimulation. It is easy to forget how much information flows through our senses every second of the day; our brains are so astute at presenting our consciousness with only the information that is important to us. If we were to focus on every single item that our senses detected, we would surely go mad.
The human brain is therefore excellent at prioritizing inputs to ensure that the world is presented to us in a way that we can handle. Question: Do the sensory problems in autistic individuals refer to the inability of the brain to prioritize inputs that would present the world in a way that we can handle? Which is the “cure” for such devastating problem?
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Why spoil the fun? Read the book. It gives you first person accounts, pathophysiological mechanisms and treatment options.
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Healing is best described as the attainment of inner peace. It is the sick person’s attainment of equanimity. Sometimes we may encounter a substantial mental obstruction, the notion that the pervasive developmental disorder is the entire ball game. We will inevitably respond to what we make of events rather than to the events themselves. We act from meaning more than from fact.
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Olga, sensory-motor dyscoordination is likely due to inherited gene events, their SNPs and environmental events. These events can dyscoordinate the periphery as well as the entire network. An example is AP conduction velocity abnormality and thus tremor in a very broad spectrum of inherited system anomalies.
The imaging consortium studies are confirming regional volume and myelination differentials in cohorts of tens of thousands. For example, see Nature. 2015 Apr 9;520(7546):224-9. Common genetic variants influence human subcortical brain structures. Hibar DP, et.al.
Other studies reveal myelination differentials, both expected to influence velocity. Joe Ray Newton
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Nice comment- as always well informed. Olga already read the blog but I am not sure that she will be keeping tract of the comments. Olga did mention several possible mechanisms in her book. Maybe you can comment on them after reading the appropriate sections. The book is fairly inexpensive and a good read.
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Thanks Manuel, we would like to read Olga’s book, but, have no income except social security. Joe
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It sounds most interesting and I will endevour to get this book from Spain.
I will again bother you with my son’s case for he was totally bombarded with an assault of stimuli. intubated and extubated several times, lines for drips, in arms and legs, bleeding and vomiting needing feeding tubes, three operations owith several episodes of resuscitation, the noises ,de lights of intensive care of grand prematures.. (just 1 kgr)….
I sometimes wonder if it was rhat rather than the effects of dexametasone, oxygen at high preassures, and retinopathy linked to bleeding of germinal matrix which studies, 25 years ago seemed to associate to autsim/discapacity in premies which are at the root of his tactile defences hate of some noices and yet fondeness of music. , Whatever it is hard to have a son whom one has never been able to hug.
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Sorry, I have been busy as of late. Third grant in an equal number of months.
Olga’s book was translated into Spanish- at least the first edition. I am not sure what are the plans for the second edition.
Th prematurity is definitely a risk factor for autism.I have argued that this accounted for in terms of damage to the germinal cell layer. You can read more in med Hypothesis 83(1):32-8, 2014.
My grandson suffered from extreme sensory sensitivities and would not allow to be hugged or touched particularly in the face. We established desensitization massages early on. Although he complained initially now he looks forwards to be hugged. Unfortunately in many other areas he has deteriorated.
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