I was fine chattering away to myself, singing or making sound patterns, in order to close out the impact of the invasiveness of others, and being told to shut up only heightened the desire to surround myself with the sound of my own voice. If I was expected to reply, however, this was the complete antithesis. Hearing myself speak in my own voice in acknowledged connection to the world was excruciatingly personal and felt like fingernails down a blackboard.

Source: Williams, Donna (2002-09-14T23:58:59). Exposure Anxiety – The Invisible Cage . Jessica Kingsley Publishers. Kindle Edition. 

I’m also a vocal stimmer who shuts down when speaking.

I was fine chattering away to myself, singing or making sound patterns, in order to close out the impact of the invasiveness of others, and being told to shut up only heightened the desire to surround myself with the sound of my own voice. If I was expected to reply, however, this was the complete antithesis. Hearing myself speak in my own voice in acknowledged connection to the world was excruciatingly personal and felt like fingernails down a blackboard.

Source: Williams, Donna (2002-09-14T23:58:59). Exposure Anxiety – The Invisible Cage . Jessica Kingsley Publishers. Kindle Edition. 

It wasn’t that the volume was too loud so much as that in the grip of an adrenaline rush everything was sensorily too much. The intense ‘pain’ was that the personal, individual, me-ness in it was unbearable. I was allergic to the experience of my own existence and the experience of hearing my own voice speaking from connected expression as me could, at times, be far worse than the terrible feeling you get hearing your own voice on an audio tape or answerphone.

Source: Williams, Donna (2002-09-14T23:58:59). Exposure Anxiety – The Invisible Cage . Jessica Kingsley Publishers. Kindle Edition. 

Computers as the essential prosthetic device for autistics?

Despite a common history of what can, with the wisdom of hindsight, be termed “oppression”, the limited social, networking, and organisational skills of people with AS together with their aversion to direct human contact, had prevented them joining together to form an effective movement to address their specific issues. All this changed however with the advent of the Internet. Computers are the communications medium par excellence for autistics. A significant number of autistics claim that computers mirror the way their minds work (Grandin, with Blume, 1997). By filtering out all the sensory overwhelm caused by actual physical presence, computers free up autistics’ communicative abilities.

InLv members regularly sing the praises of the new medium that allows them to have the form of communication they desire, while protecting them from the overwhelming sensory overload and rapid processing demands of human presence. For many, email lists are their first experience of community. Jane Meyerding, a member of InLv makes clear just how much autistics owe to computer technology:

Like a lot of ACs (autistics and cousins), I find myself able to enjoy “community” for the first time through the internet. The style of communication suits me just fine because it is one-on-one, entirely under my control in terms of when and how long I engage in it, and, unlike real-life encounters, allows me enough time to figure out and formulate my responses. In real-world encounters with groups—even very small groups—of people, I am freighted with disadvantages. I am distracted by my struggle to identify who is who (not being able to recognise faces), worn out by the effort to understand what is being said (because if there is more than one conversation going on in the room, or more than one voice speaking at a time, all the words become meaningless noise to me), and stressed by a great desire to escape from a confusing flood of sensation coming at me much too fast. (Jane Meyerding – Thoughts on Finding Myself Differently Brained, 1998)

As this statement shows, for autistics, computers are the essential prosthetic device, one which turns them from withdrawn, isolated individuals, to networked social beings, the prerequisite to effective social action, and a voice in the public arena.

Autistics compare the importance to them of computers with the importance of seeing-eye dogs to the blind. Martijn Dekker, who is the ‘owner’ of the InLv email forum, and a prominent autistic activist foreshadows puts it plainly:

For reasons obvious to our HFA/AS community, I consider a computer to be an essential disability provision for a person with Asperger’s. (8 Nov 1998)

Source: NeuroDiversity: The Birth of an Idea by Judy Singer

See also: Bring the backchannel forward. Written communication is the great social equalizer.

Autism is simply an internal human ‘normality’ with the volume turned up. We all have experienced moments when we aren’t quite aware or when we are too aware to handle the world. Or moments when we aren’t quite aware of the company we are in or so overly aware of it that it gets hard to function. We all have had times when we’ve had hardly any awareness of our bodies, even been out of them, or felt so in, weighed down by them, that we become hypercritical, eager to escape, tune out, disappear. We have all had times when we’ve lost the plot, the why, the what or been distracted by the meta-reality inside our heads to the extent that we are suddenly jolted out of a daydream. So too, have we all had moments when we have been so aware that we have taken things in in almost overwhelming, extreme detail. For me, the experience of ‘autism’ is not of any of these things in themselves, but rather the frequency and extremity with which they are experienced and the degree to which these experiences affect how one expresses oneself and relates to one’s inner world and the outer world. It’s a matter of whether you visit these states or whether you’ve lived there.

Source: Autism and Sensing: The Unlost Instinct

Via: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

I updated “Neurodiversity in the Classroom” with a selection on sensory overwhelm in school environments from “Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom”.

One of the more encouraging developments in the autism field over the last decade or so has been a growing awareness of the significance of sensory issues. Sensory sensitivities are included in the DSM-5 as part part of the diagnostic criteria for autism, and in teacher training materials, such as those provided by the AET. They are also highlighted in campaigns by the National Autistic Society (NAS), for example. But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

But despite these signs of increased understanding, I’m not convinced that in our schools there is a sufficiently nuanced appreciation of this multi-faceted phenomenon, which potentially influences a whole range of physical and perceptual processes (Bogdashina 2016). Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

Selections on Monotropism from Autism: A New Introduction to Psychological Theory and Current Debate

Another theoretical account which might fall under the broad heading of integration and complexity is the interest-based theory, monotropism (Murray et al., 2005). This theory, developed by autistic academics, posits that the defining feature of autism is atypical allocation of attention. The difference between autistic and non-autistic people is characterised as follows: “It is the difference between having few interests highly aroused, the monotropic tendency, and having many interests less highly aroused, the polytropic tendency” (ibid., p. 140). Consequently, this model places causal primacy on the intense focus apparent in the diagnostic domain of RRBIs, with other diagnostic features following from this underlying difference. To the extent that social interaction requires diffuse and distributed attention, autistic people are not well suited to that activity. Monotropic theory, which awaits empirical testing, provides a vivid description of the autistic experience of novelty and change, giving a valuable insight into the autistic experience of a crisis, or “meltdown”:

To a person in an attention tunnel every unanticipated change is abrupt and is truly, if briefly, catastrophic: a complete disconnection from a previous safe state, a plunge into a meaningless blizzard of sensations, a frightening experience which may occur many times in a single day. (Ibid., p. 147)

Monotropic attention would lead to the development of specialised skills but also difficultly dealing with change.

The only theory I’m aware of that seems to make a decent stab at explaining the many seemingly disparate features of autistic psychology – from inertia to communication problems to hyperfocus and spiky profiles – is monotropism. However, this theory (formulated by autistics who aren’t professional psychologists) has received relatively little attention from psychologists and awaits direct empirical verification.

Source: Happé, Francesca. Autism (p. 128, 129, 150). Taylor and Francis. Kindle Edition.

I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm”.

  1. Learn from autistic people
  2. Tell your child they are autistic
  3. Say NO to all things stressful & harmful
  4. Slow down your life
  5. Support & accommodate sensory needs
  6. Value your child’s interests
  7. Respect stimming
  8. Honour & support all communication
  9. Minimise therapy, increase accommodations & supports
  10. Explore your own neurocognitive differences

Source: Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm