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November 19, 2013

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Celebrating difference

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Autism and sensitivity

After writing my last post on autism stigma and Autism Speaks and commenting on the posts of others on the same topic, I began to feel anxious, depressed, faint and nauseous. These are feelings that I am accustomed to having before, during and after many social interactions in person and online, whenever they extend past pleasantries and into the murky territory of feelings.

Some parents of children with more intense autism felt that Autism Speaks validated their experiences and that the opposition to it by some of the autistic community invalidated their experiences. The anger, isolation and sadness of some parents of children with more intense autism and their opposing opinions and feelings were overwhelming for me.

I began to question the effect that speaking out about issues that mattered to me was having on my mental health and daily functioning. I wondered if I had been overreacting all this time, that perhaps all the things that matter so much to me was of much less consequence then I attributed to them such as sexism, racism and disabilism. In my heart, I know that raising awareness of these issues is important but the diverse reactions to expressing my concerns on issues important to me plunge me into despair.

I wondered how I could be more resilient and it occurred to me to write about something different, something more factual, like explaining a particular evidence-based therapy for autism. Instantly, the idea of delving into routine instruction made me feel better and it occurred to me that ‘facts’ were comforting for me by allowing me to escape from ‘feelings’. I began to wonder whether other people with autism chose facts over feelings to avoid overwhelming emotional responses.

Instantly, I thought of my son Jeremy, whose favourite reading material is non-fiction. Most nights, Jeremy settles himself to sleep every night by doing mathematics problems from age-appropriate exercise books that he has asked me to buy for him. Jeremy finds many fictional TV shows, movies and story books disturbing especially when viewing them for the first time. The moment that the central problem of the story develops, Jeremy runs from the room upset. It could certainly hold true for Jeremy that facts represent a comfortable alternative to the potentially overwhelming emotional challenges of fiction.

Our extreme emotional reactions to things tended to imply that we are more sensitive to feelings rather than oblivious to them as is often perhaps inaccurately assumed of people with autism. So I decided to look into that idea of emotional sensitivity in autism and I came across an article that immediately resonated with me; The Intense World Theory- A Unifying Theory of the Neurobiology of Autism (2010)1*. In this lengthy, well-referenced article the researchers discussed their theory of autism, the evidence that supports their theory (although it still remains a theory) and they compared it to other theories of autism such as the Weak Central Coherence Theory, Theory of Mind and Empathizing-Systemizing Theory1.

The Intense World Theory of Autism ‘proposes that autistic traits could emerge if a molecular syndrome is activated that sensitizes gene expression pathways to respond excessively to environmental stimulation’1. The molecular syndrome is proposed to cause hyper-reactivity and hyper-plasticity of neuronal microcircuits in the brain to produce hyper-functionality1. This could result in hyper-perception, hyper-attention, hyper-memory and hyper-emotionality1.  Clearly, hyper-emotionality sounded very familiar to my current state of mind.

According to Markram & Markram (2010) ‘Hyper-capabilities are one positive aspect of such a brain, sensory overload, avoidance of stimulus-loaded situations and rapid lock-down into behavioural routines are the downside of it’1. Although, I would argue that the ‘downside’ sometimes has an ‘upside’.

I was already aware that sensory processing differences2;3 and higher anxiety levels4;5;6 are very common among children with autism. I was also aware that the repetitive behaviours of autism have been shown to be related to anxiety7 and sensory processing5. Together with my own experiences and those of my boys, the Intense World Theory of Autism seemed to fit very well.  

Damian (my other son), Jeremy and I, are all hyper-sensitive to certain stimuli such as noise, touch and movement and we exhibit the pros and cons that are associated with our preferential processing and learning. When I mention preferential, I mean the brains preference rather than our own conscious choice, although conscious choices may also come into play when we become consciously aware of what we find more comfortable or bearable.

One thing that didn’t seem to fit with regard to the Intense World Theory was that it did not refer to hypo-sensitivities. However, those people with autism who exhibit hypo-sensitivities in some areas often also exhibit hyper-sensitivities in other areas and vice versa2;8. In addition, hypo-sensitivities could have similar outcomes due to the need to attend to specific stimuli which are not typical, rather than avoid stimuli as in hyper-sensitivities.

I can do things that some of the autism theories say that I shouldn’t be able to do (such as empathize) from time to time, as can many other people with autism, it is just not my brains preference to attend to those functions due to preferentially attending to other and/or to avoid specific intensely experienced stimuli (and the resultant reduced practice also contributes to my overall performance).

The Intense World Theory of Autism left me with an explanation for the way I react to my environment, physically, emotionally and socially and still left me with self respect. It fits with everything I’ve written so far about autism in my blog and that realisation temporarily diverted my attention from what I find difficult to what seems to flow for me (nicely fitted facts and theory) and I feel much better for it.

My lesson from all of this was that I don’t have to give up trying to make a difference by promoting awareness of sensitive issues but sometimes allowing myself to be diverted (if I find myself becoming overwhelmed) by plain facts or quiet routine might just be what the doctor ordered.

Anyway, I will leave you with a youtube song that I enjoyed listening to, it is not pitch perfect but I like it and it helps to increase awareness of the sensitivity of people with autism http://www.youtube.com/watch?v=Sse0CXDuv64

*The Intense World Theory of Autism article can be obtained for free via the following PubMed link: www.ncbi.nlm.nih.gov/pubmed/?term=Markram+autism+theory+intense

References:

  1. Markram, K. & Markram, H. The intense world theory: A unifying theory of the neurobiology of autism. Frontiers in Human Neuroscience 2010; 4:224, 48 pages DOI: 10.3389/fnhum.2010.00224
  2. Lane, A.E. Dennis, S.J. Geraghty, M.E. Brief report: Further evidence of sensory subtypes in autism. Journal of Autism and Developmental Disorders 2011; 41:826-831
  3. Ben-Sasson, A. Hen, L. Fluss, R. Cermak, S.A. Engel-Yeger, B. Gal, E. A meta-analysis of sensory modulation symptoms in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders 2009; 39: 1-11
  4. Reaven, J and Hepburn, S. The parent’s role in the treatment of anxiety symptoms in children with high-functioning autism spectrum disorders. Mental Health Aspects of Developmental Disabilities 2006; 9(3): 1-7
  5. Sukhodolsky, D.G. Scahill, L. Gadow, K.D. Arnold, E.L. Aman, M.G. McDougle, C.J. McCracken, J.T. Tierney, E. Williams White, S. Lecavalier, L. Vitiello, B. Parent-rated anxiety symptoms in children with pervasive developmental disorders: Frequency and association with core autism symptoms and cognitive functioning. Journal of Abnormal Child Psychology 2008; 36:117-128
  6. White, S.W. Oswald, D. Ollendick, T. Scahill, L. Anxiety in children and adolescents with autism spectrum disorders. Clinical Psychology Review 2009; 29(3):216-229
  7. Boyd, A.B. Baranek, G.T. Sideris, J. Poe, M.D. Watson, L.R. Patten, E. Miller, H. Sensory features and repetitive behaviors in children with autism and developmental delays. Autism Research 2010; 3(2): 78-87
  8. Lane, A.E. Young, R.L. Baker, A.E.Z. Angley, M.T. Sensory processing subtypes in autism: Association with adaptive behavior. Journal of Autism and Developmental Disorders 2010; 40:112-122