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CVI Autism Team Blog 2

We left the previous blog considering "What does CVI look like in a child with autism?" This also raises the flip-side question, what does autism look like in a child with CVI? We thought about the behaviours of many people we know with CVI, and came up with an enormous list. Essentially, if you look up 'autism', there isn't anything that couldn't be attributed to CVI, but as we previously stated, just because something could be CVI, it doesn't mean that it is.

We know there are other causes of autistic behaviours, which may include significant ocular visual impairments (eye blindness) and reactions to noise (please see our section on Cerebral Auditory Impairments if you haven't read it). We also know that there are reasons some cerebral visual impairments, for example simultanagnostic vision, can present very differently behaviourally from one person to the next. One child may avoid looking at faces and fear unknown people, whereas another is very sociable. One reason may be the age of the child when the injury to the brain occurred, and if it took place in later childhood (as opposed to before or during birth) the child may have already developed skills, like talking and socialising, which have carried over into post-injury life. Then it all got very complicated, so we went back to the drawing board to see if we could come up with a simpler way to understand and explain why CVI seems to create autistic behaviours in some children, and why these behaviours seem to vary and be inconsistent.

In relation to helping people support a person with CVI, we stress that for them to learn, three features need to be present and optimal:

  • The information needs to be made perceivable - we can only learn from what we can perceive
  • The information needs to be made meaningful - we can only learn from what we understand
  • A receptive state of mind - we can only learn when we can give attention

These three conditions are like the sliders on a sound-mixer, they are each separate but work together, and affect the quality of the outcome.

If all three are optimal, then learning is optimal. If one is significantly reduced, it can have a severe knock-on effect on the other two and make learning much more challenging, for example if a child is frightened or stressed it is harder to learn

We created our own small mixer board, below.

This is clearly not intended to be a scientific exercise, but just a way to think about the impact of these three conditions on the ability to learn. What we seem to be finding, is that where each is close to 1, learning is optimal, as would be expected. As the levels get higher, learning becomes more difficult, also to be expected. However, it also seems from some of the accounts we have heard, that as the numbers get higher, reactive behaviours can develop, and these behaviours can be labelled as autistic.

In the children we have learned from, these behaviours include:

  • Being extremely averse to changes in routines
  • Extreme adversity to going to new places or meeting new people
  • Self-harming (head banging, pinching & biting self)
  • Refusing to move attention away from a particular toy or item
  • Physically aggressive behaviours (biting, hair pulling, pinching, kicking)

This is just a hypothesis, and we thought it may be useful to test it, by going back to review the development of Daniel and Connor, featured in our previous blog. We plan to add further people as the study develops.

We aim to look at both boys in blocks of one year, and in this blog, we will consider their first twelve months. We will hear from their mothers. We will add further relevant information we know about both boys, and consider everything in terms of what has been

  • perceivable
  • meaningful, and
  • their states of mind

We will then attempt to give the boys their own voice, and finally reflect.

We do not know what we are going to find, we are not reviewing anyone else's work, methods, systems or approaches. We are testing a hypothesis that currently makes sense to us. We may be wrong, or on the right track, as these two children are beginning to make major developmental steps by ensuring constant attention is given to these three elements.

Probably with further developments new adjustments will be needed. We are all here to learn.

Daniel Birth - 12 Months Old

Daniel's mother writes:
Daniel was only 3 pounds in weight when he was born prematurely, and seemed to be coping well until day fourteen when he suffered multiple organ failure. His first twelve months of life was spent almost entirely in intensive care, he had a cardiac arrest aged five months. Occasionally we could take him out, and he seemed to enjoy being under trees with the sun shining through the leaves. He also liked to be by the window. I would say Daniel was in pain 95% of the time. The only pain relief he could have was paracetamol, although this seemed to provide some comfort. He was regularly held down whilst people tried to find veins to put lines into, he has track scars across his body from this period. This was horrifying to watch, and he was clearly terrified. He also had a nasal gastric tube for feeding (requiring him to be fed via his nose), a tracheostomy and he needed a specialised ventilator. These interventions continued all day and night, every day and night. My husband and I were able to cuddle him, and we held his hand and squeezed his fingers. We also enjoyed skin to skin time with Daniel whenever we could, which we all needed. I had a little DVD player for night time when we had to leave, with old Disney movies and my voice reading nursery rhymes and telling stories. It was an awful year, but I felt he was still with me at the end of it, but in his second year he regressed severely.

Perceivable
We know that Daniel has never had any known issues with reduced visual acuity or hearing loss, so it is likely that he had some visually and auditory awareness of his surroundings. Medical advisors consider it most likely that Connor sustained a brain injury during the cardiac arrest when he was five months old, and this injury was most likely to be responsible for his CVI. Looking back, assuming Daniel has features of Balint Syndrome at this stage (these features were identified later in childhood), it is likely that he would have been affected by looming, which would have added to his fear, anxiety and stress.

Meaningful
The visual and auditory information will have made little sense to Daniel, and he was too young to have developed enough language to explain what was happening to him. Furthermore, presumed Balint Syndrome would have rendered only elements visible to Daniel, so his visual perceptions may well have been without meaning. He connected meaning to the skin to skin time with his parents, as it was the only period when no one hurt him.

State of Mind
Daniel was in pain and frightened for most of his first year of life, with only tiny gaps when he was allowed skin to skin time as breaks from the trauma.

Daniel's Learning Mixer-Board

Plotting Daniel's first year onto our mixer-board, we can see that whilst a certain amount was probably perceivable, as so little was meaningful, and he was in such a distressed state of mind, he could not learn anything, but his mother raises an important point to note. At this stage in Daniel's journey his mum did not feel as though she had 'lost' him. Despite the trauma and pain, he was still very much connected to his mother and father, and knew who they were, and responded with love and affection to their presence.

Daniel: It's the same all the time, some things hurt more than other things, I don't understand why I am here or anything around me. I have no sense of time, I don't know how long I have been here or how long I will be here. All I know is that most of the time it's not very nice. I like looking at one thing at a time, because that is the way I see. I understand one thing, them, when they hold me close I am safe, that is the only thing I look forward to.

Connor Birth - 12 Months

Connor's mother writes: We didn't know anything was wrong with Connor before he was born. Over three months it unfolded, via multiple doctor and hospital appointments, that he had a rare chromosome disorder, his brain had developed abnormally in the womb and he was blind with a cerebral visual impairment. We also found out that he had floppy airways, a poor swallow, low muscle tone and an abnormally large head. Connor was almost completely visually unresponsive in his first year. We saw a VI teacher when he was six months old, and under a black blanket shining a torch onto a red shiny material, she noticed Connor 'stilling'. We started a long journey of developing visual responses. Connor was hyper sensitive to noise, but it wasn't consistent, sometime all it took was a car driving past to start a terrifying screaming fit that could last for hours.

That first year I would say Connor was sometimes hungry (due to feeding challenges), so uncomfortable, I think he was shattered, and I think he was frankly terrified of life. He clung to me like a limpet, he had no neck control, his head flopped like a new born baby. The hospital interventions were brutal, I can see why they were necessary, and watched every one, sometimes holding him down (thinking it would be better being me than a stranger) making me complicit in these assaults (in his view). This, with demons I knew nothing about, made Connor a very anxious baby, prone to screaming episodes. He never slept for more than an hour at a time. The only thing other than me that he responded to consistently was his dog Perry.

Perceivable
Connor had virtually no visual responses in his first six months, and through ongoing development from six months to one year old, he increasingly stilled and sometimes turned to a visual source. Connor could hear, but there is little evidence that he was able to make sense of what he heard, and it may well be that noise was a cause of anxiety for Connor (for more information see Cerebral Auditory Impairments).

Meaningful
Connor knew his mother and towards the end of that first year knew his puppy Perry. Connor recognised the word Perry and consistently responded to it, showing at that very early stage, amongst all the stress, that his temporal process of learning to recognise and learn through perceivable and meaningful experiences was working. It also showed at that early stage Connor could recognise, and thus potentially learn language.

State of Mind
Connor's state of mind ranged from terror, through stress and anxiety, to at best, feeling temporarily safe with his mother.

Plotting Connors first year on the mixer board we can see that learning would appear almost impossible on every level.

Connor: Sometimes it's nice and quiet, I'm so tired, but I'm frightened to sleep. Sometimes I am woken up and people hurt me, sometimes I am woken up because I can't breathe. I want to sleep, but I'm too scared, and when I can't stop myself from going to sleep, I wake up frightened, not knowing where I might be or who might be here, and whether I might get hurt of not. Sometimes there are noises that are so close and loud I think they are going to hurt me. My mother is always there, somewhere, if I scream she will come, always. I know the word Perry, it makes me laugh because people say it in a funny way.

Blog 2 Conclusions

We are aware that these accounts make uncomfortable reading, and both mothers agreed to revisit dark times to share their stories. We have heard from many parents that children who have had multiple medical interventions, particularly at a young age, have been deeply affected by the experiences. We plan to bring some of these experiences together to share at a later date. We do not know at this stage if these experiences are a factor in the autistic behaviours Daniel and Connor went on to develop.

We are not going to draw any conclusions at this stage, just see what we learn, and consider our original hypothesis. We have not included children with ocular visual impairment, and children who developed CVI due to a brain injury later in life. These case studies will follow, but we felt it was best to start by keeping things as simple as possible, because, as we found, very quickly things get very complicated.

In the next blog we will look at the following year of Connor and Daniel's lives.

Notes:

Presumed Balint Syndrome
Technically, for a diagnosis of Balint Syndrome, the affected person has to be able to describe their limited vision (please read our Balint Syndrome section for a more detailed explanation).

Both Daniel and Connor were assessed by an expert many years later when they were each seven. The clinical features that fit with Balint Syndrome, as well as lack of ability to see in their lower field of vision, were identified, including:

  • They could only focus on single items at a time
  • Their eyes did not move around the scene, except when they changed focus to a new item
  • Their reach using vision to guide their movements was inaccurate.

However, as they were unable to describe their vision (both boys have very limited communication skills), nor search with their eyes upon instruction, this can only be Presumed Balint Syndrome. Mindful of this, it is likely that Connor had Presumed Balint Syndrome from birth as his brain developed abnormally in the womb, and that Daniel developed Presumed Balint Syndrome following the cardiac arrest he suffered when he was five months old.

The CVI Autism Team

Charlotte Chiswick (lead) Senior Specialist Teacher (Autism), CVI Scotland Trustee

Pam Young, Chartered Teacher of the Visually Impaired (special interest in VI and autism)

Dr Isobel Hay, Community Paediatrician (special interest in dorsal stream dysfunction and autism)

Lorna Smith, mother to child with autism and CVI, Trustee, CVI Scotland

Diane Fairgrieve, mother to child with CVI, Associate, CVI Scotland

Prof Gordon Dutton, Ophthalmologist, expert in CVI

Fiona Gorrie, Postgraduate Student (Psychology), CVI Scotland Associate (special interest in CVI, autism and language)

Dr Sylvie Chokron, Neuropsychologist & Senior Research Scientist, expert on combined CVI & autism

Tasia Martinucci, Senior Teacher of the Visually Impaired, expertise teaching autistic children with visual impairments.

Helen St Clair Tracy, mother to child with CVI, Chair of Trustees, CVI Scotland,

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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.