Jessy’s social understanding remained, and remains, radically incomplete. Such simple lessons. ‘We can’t ask them to move because they were there first.’ The difference between irritation and hurt feelings. Making sense of people, ‘grasping the general significance of situations’. What the autistic adult, like the autistic child, finds hardest of all. What is it like to have a mind that picks ‘remembrance’ out of the newspaper yet must struggle to comprehend the most ordinary vocabulary of social experience? What is it like to have to learn the myriad rules of human interaction by rote, one by one? By rote, because the criterion of ‘how would I feel if’ is unavailable, since so much of what pleases (or distresses) her, does not please others, so little of what pleases (or distresses) others pleases her. Clara Claiborne Park writing about Jessy, aged 42 (Claiborne Park, 2001, pp. 16–7)
I must mention that the boy loved to watch the different calendars of different rooms and then recall the numbers. He also compared them. He thus spent a lot of time, gazing at the numbers. He wanted to know what they meant. He found a kind of pattern in them. He wondered how the figures bent and straightened up, curled and sometimes broke! Tito Mukhopadhyay aged 8, writing about himself as an infant (Mukhopadhyay, 2000, p. 19)
In fourth grade, I was … interested in both dinosaurs and astronomy, especially since this was the time of the Voyager flybys of Jupiter and Saturn. My appetite for information was voracious and I would clip or photocopy everything I could find on the subject in the newspaper, magazines, academic journals and books. I think my interest in dinosaurs waned at this point, though I remember an occasion when I went to the neighbourhood pool and I went up to total strangers asking them to ask me any question about dinosaurs because I felt I knew everything about them. Sarah quoted in Sainsbury, 2000, p. 68
My parents and my family weren’t really into reading and the sorts of things I was interested in so it was difficult and it was hard for my family to appreciate the passionate way that I got involved with things. They didn’t understand why anyone would want 100 mice, for example, little white mice with purple eyes that I bred in Smiths Crisp tins covered with chicken wire in the garage, and they didn’t understand why I collected beetles or why I would line up my insects and race them. My sisters wouldn’t do those sorts of games, they played tea parties and dolls houses and I wasn’t interested in those sorts of things. Lawson and Roth, 2011
During our first hour on the road, Elijah rifled through hundreds of stickers I had brought along to keep him busy in the car. He feverishly peeled them and pasted them onto a large piece of cardboard like a small machine with his strict and narrow concentration. In the rear-view mirror, I saw the waxy paper backings of the stickers piling up in the back seat like fluffy patches of snow surrounding him. When he had peeled the very last sticker from its paper he let out a screech. Quickly, I popped the Pinocchio soundtrack into the tape player to redirect him, but to my dismay, I had forgotten to rewind it. … ‘REEE…WIND’ he bellowed when he suddenly heard Pinocchio’s voice singing mid-song. Valerie writing about her son, aged 5 (Paradiž, 2002, p. 132)
As I viewed the world with a different lens, a differing perspective, the influence on my creativity and making is not surprising. I don’t think there has been a day where creativity hasn’t been the major part of my life. As a child, I was always assembling, collecting and drawing – never letting go of those desires or a pencil ever since. At 6 years old, when asked what I wanted, I said ‘to be an artist’. It seemed the most honest, logical and heartfelt answer I could give. Jon Adams, 2016
I have very uneven skills. This is another one of those enigmas. I have University degrees, I am married and I have three grown children. However, I have huge problems with being disorganised, getting lost, using public transport, understanding others, and just the practical interactions of social situations. I think many of you might be saying ‘So what, I do as well.’ I know that neural-typical individuals might have issues in these areas but I would suggest to you that it is the degree of the ‘issue’ that separates us. How many of you need to sit down on the path outside of a supermarket and do breathing exercises because they have changed the tinned soup isle?! Lawson, 2018
ICD-10 | DSM-5 | Comments | |
What are the possible diagnoses? | In ICD-10, the ‘spectrum’ is divided into three subtypes. DSM-5 has relinquished subtypes such as Asperger in favour of a single continuous spectrum, reflecting the variability of symptoms and how they are expressed. ICD-11 mirrors this DSM-5 approach, but does differentiate autism with and without intellectual disability. | ||
What are the main types of symptom? | DSM-5 and ICD-11 both merge communication and social interaction into one social communication symptom cluster. Clinicians had found it hard to categorise symptoms as either, as the difficulties are interrelated. For instance, if a child has limited language (a communication problem) this will almost inevitably limit social interaction. | ||
By what age must symptoms have appeared for diagnostic criteria to be met? | For childhood autism (but not for Asperger syndrome) ‘functional impairment’ in social interaction, or in language use for communication, must have appeared by age 3 years. | Social communication difficulties and RRBIs must have been present in early childhood; however, ‘functional impairment’ need not be apparent till later. | DSM-5 criteria accommodate cases where early childhood symptoms only become apparent later than 3 years of age. This allows for what was formerly Asperger syndrome within a continuum of different developmental profiles. |
Sensory problems are common in autism: how are these represented in the criteria? | The ICD-10 criteria do not include sensory problems as a formal criterion. | DSM-5 includes sensory hyper/hyposensitivities as part of the ‘non-social’ RRBI cluster of symptoms. | The evidence that sensory difficulties occur in a majority of autistic people, convinced the DSM-5 working groups to include them as a diagnostic criterion. ICD-11 has done the same. |
How are differences in symptoms and severity represented in diagnosis? | The DSM-5 severity scores should help clinicians to avoid the confusing informal terms ‘high-functioning’ and ‘low-functioning’. | ||
How are additional problems beyond the main symptom clusters represented? | In ICD-10, problems such as epilepsy or dyslexia would be noted as clinical features beyond the main diagnosis. | The aim of the DSM-5 specifiers is to make each diagnosis as precise and specific as possible to the individual person. ICD-11 adopts similar principles, but treats autism with and without intellectual disability as distinct sub-diagnoses. |
My mother tells me I was very good at capturing the essence and persona of people. At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating. (Willey, 1999, p. 22)
One of the most recurrent problems throughout middle childhood was my constant failure to distinguish between my knowledge and that of others. Very often my parents would miss deadlines or appointments because I failed to tell them of these matters. For instance, my parents missed the school’s Open House in my fifth grade and my mom asked me afterward ‘why didn’t you tell us about it?’ ‘I thought you knew it’, I replied. Sarah quoted in Sainsbury, 2000, p. 60
Ann’s mother has spent a long time cooking Ann’s favourite meal: fish and chips. But when she brings it in, Ann is watching TV, and she doesn’t even look up or say thank you. Ann’s mother is cross and says ‘Well that’s very nice isn’t it! That’s what I call politeness!’
I like the idea of chain reactions – one thing happening which triggers off another, which triggers off another and so on and so on. I used to put string round a dozen objects and watch them all fall down at once. That’s why I love slinkies (coiled springs) so much. When you wind one round loads of things and then let go, it pulls itself through all of them. Jackson 2002, p. 52
‘I cannot thank the volunteer I spoke to enough. For the first time as a parent I felt understood. I have felt so isolated for such a long time’. Anonymous comment from a parent (NAS)
Managing my autism on national television still requires an enormous effort. Sometimes I fail, I do just go off on one. But I realise now there is no way I could do my job without Asperger's. What I do in terms of making programmes is afforded to me because of my neurological differences. Being able to see things with perhaps a greater clarity, being able to see the world in a very visual way. (Chris Packham: Asperger’s and Me, 2017)
I have got one child in our survey; he does not talk. His parents were hiding information about him. They thought that this type of disease is cured through traditional or spiritual means. They said [his illness was] due to spirit possession – likift – because someone had given him some potion. When I saw the child he was very pale and […] chained. (Tilahun et al., 2016, p. 7)