This information introduces the key issues concerning children who have visual impairment and an autism spectrum disorder (ASD).

It will be useful to practitioners working with children who have both visual impairment and an ASD. It may also be useful to the families of such children and to those concerned with adults who have both visual impairment and an ASD.

The meaning of 'visual impairment'
For the purposes of this article, visual impairment is 'a profound permanent reduction or absence of vision that cannot be corrected with spectacles or contact lenses'.

The children described in this article

Children who have both a visual impairment and an ASD will all have individual characteristics, abilities and needs. However, in very broad terms, it may be useful to consider three groups of children who have both conditions.

1. In most children who have both visual impairment and as ASD, the visual impairment is considered to be the primary disability because it is diagnosed first. Visual impairment is usually identified at birth or in the first few months of life, before it is possible to diagnose an ASD. This article is primarily about these children.

Many of the children in this group have additional needs as well as visual impairment and ASD. These may include:


2. Some children with an ASD start life sighted but later lose their sight. This may result, eg from an illness or accident.

3. Sadly, some children with an ASD lose their sight through self-injury.

If you are concerned about a child in either group 2 or 3, the sections on the number of visually impaired children who also have an ASD and on diagnosing ASD in visually impaired children will not be relevant. The information about strategies will probably be useful to you if you are concerned about a child in group 2. It is less likely to be useful if you are concerned about a child in group 3, especially if the child is continuing to self-injure.

The number of visually impaired children who also have an ASD

We do not know how many children have both visual impairment and an ASD. Visual impairment itself is low incidence, so visual impairment and ASD must be very low incidence. However, for the children concerned, for their families and for the practitioners working with them, the impact is very high. When visual impairment and ASD occur together, it is not a question of simply adding together the impact of the two disabilities - the impact is much greater because the difficulties arising from each disability interact with each other.

Is ASD in visually impaired children the same as in sighted children?

Hobson et al (1999) matched nine blind children with an ASD with nine sighted children with an ASD. Some differences in the clinical features of ASD in the two groups were identified. Marked abnormalities were less common in the blind children than the sighted children.

Hobson and Lee (2010) followed up these children, although two of the sighted children dropped out. Of the nine blind children who had originally met the diagnostic criteria for ASD, only one did so eight years later. In contrast, all seven of the sighted children continued to meet the diagnostic criteria for ASD. It is unlikely that the blind children in this study are truly representative of children who have both visual impairment and ASD: there is little doubt that many (perhaps most) visually impaired children who also have an ASD continue to meet the diagnostic criteria for ASD in the long term.

It is also important to note that, despite the progress demonstrated by eight of the nine blind children in Hobson and Lee’s study, it is likely that they continued to experience significant difficulties. This is indicated by research reported by Tadić et al (2010) who studied the language and social communication skills of visually impaired children aged six to 12 years. Although they reported that superior language skills were common in this group, pragmatic language (that is, language used in social situations and conversation) was typically weak. A substantial proportion of the children had social communication difficulties similar to those in sighted children with an ASD.

Developmental setback in visually impaired children

Staff at the Developmental Vision Clinic at Great Ormond Street Hospital have described what they refer to as 'developmental setback' (Dale, 2005, 2010; Dale and Salt, 2008).

Setback occurs in infants whose early development has followed the norms for visually impaired infants. It has been identified in about one-third of children without the ability to see form (shapes) and in a smaller proportion of those with less severe visual impairment. Onset occurs between 15 and 27 months of age. Setback may involve progress halting, skills being lost or abnormal behaviours becoming marked. In particular, social interaction, social communication and social imagination are affected. These three areas, of course, are those which constitute the 'triad of impairments' (three main difficulties) in ASD.

Currently, there is no means of predicting setback, although certain risk factors have been identified. These are:

  • any visual impairment disorder
  • the inability to see form (shapes)
  • being male
  • having a higher number of brain lesions
  • (possibly) the psychosocial and familial environment.


It is not known if early intervention can reduce developmental setback. Research is currently under way.

Most children who experience developmental setback will later meet the diagnostic criteria for ASD.

Diagnosing ASD in visually impaired children

Salt (2010) noted there are no published tools for diagnosing ASD in visually impaired children. When diagnosing ASD in a visually impaired child, Salt stated it is necessary to:

  • take account of the child's developmental skills, the level of functional vision and the presence of learning difficulties
  • modify the standard diagnostic criteria to take account of the expected behaviours in visually impaired children
  • involve a specialist professional team that works closely with the parents; the team should have expertise in both visual impairment and ASD and include a paediatrician, a psychologist, a qualified teacher of the visually impaired, other teachers involved with the child, a speech and language therapist and an occupational therapist.


Macleod and Curtis (2010) emphasised the importance of:

  • involving the parents and listening to their concerns, particularly as the process may result in another diagnosis being made (in addition to the visual impairment)
  • making sure that assessments lead to intervention plans which are implemented.


They also noted that the diagnosis of an ASD can come as a relief for parents as it helps them to understand their child more fully.

Although diagnosis of an ASD in visually impaired children is unusual before the age of five years (Salt, 2010), early assessment for ASD alongside visual impairment can result in interventions at home and school which transform life for the child and the family (Macleod and Curtis, 2010).

Strategies for supporting children who have both visual impairment and an ASD

Currently very little is known about which strategies are effective for bringing about progress in children who have both visual impairment and ASD. Very little guidance has been published.

What could be seen as the standard work (Gense and Gense, 2005) originates in the USA and does not translate well in all respects to the situation in the UK.

Gibbons (2005), Jordan (2005) and Bahar et al (2003) offer some useful pointers. Bahar et al (2003) refer specifically to children with optic nerve hypoplasia and septo-optic nerve dysplasia (forms of visual impairment). Although they do not actually refer to the children as having ASD, the list they provide of what they call the 'common observable traits' associated with these conditions reads very much like a list of the characteristics of ASD. In fact, the strategies they outline are likely to be appropriate for many other children with visual impairment and ASD, regardless of the cause of the visual impairment.

In order to provide additional guidance for practitioners, the Visual Impairment and Autism Project was set up. This ran from September 2008 to March 2011. A major outcome was a two-day conference which took place in London in November 2010. More information about the Project and the conference can be found on the Project's web pages at www.rnib.org.uk/autism.

In May 2011, RNIB published the Project's resource pack. This consists of a CD-ROM and booklet. The booklet is brief, its main purpose being to provide a guide to using the pack. The CD-ROM includes printable PDFs and is interactive, allowing users to navigate easily between sections.

The resource pack has the following sections:

  • A. A series of case studies
  • B. A glossary
  • C. Approaches and strategies, covering:
    • underlying principles
    • promoting learning
    • managing the environment
    • promoting effective communication
    • supporting the child's sensory needs
    • promoting wellbeing
    • promoting independence and
    • supporting musical skills and using musical interests
    • D. Resources, with information about equipment, website addresses and a list of references.


    The resource pack is available from RNIB's online shop. 

    Support for the families of children with visual impairment and an ASD

    Although the Visual Impairment and Autism Project recognised the importance of families and their need for support, it did not set out to identify strategies suitable for use at home. However, it is likely that many of the strategies in the resource pack can be used in the home.

    Support for adults with visual impairment and an ASD

    The Visual Impairment and Autism Project also recognised that many (if not most) children who have both visual impairment and an ASD become adults who have both conditions. Although the Project did not focus on the needs of adults, it is likely that many of the strategies in the resource pack are appropriate for use with them.

    References

    Bahar, C., Brody, J., McCann, M. E., Mendiola, R. M. and Slott, G. (2003). A multidisciplinary approach to educating preschool children with optic nerve hypoplasia and septo-optic nerve dysplasia. RE:view, 35 (1) p.15-21.

    Dale, N. (2005). Early signs of developmental setback and autism in infants with severe visual impairment. In Pring, L. (ed). Autism and Blindness. London: Whurr.

    Dale, N. (2010). Developmental setback and screening for early social communication difficulties. In Children who have visual impairment and autism conference. London, Thursday 18 and Friday 19 November 2010.

    Dale, N. and Salt, A. (2008). Social identity, autism and visual impairment (VI) in the early years. British Journal of Visual Impairment, 26 (2) p.135-146.

    Gense, M. H. and Gense, D. J. (2005). Autism spectrum disorders and visual impairment: meeting students' learning needs. New York: AFB.

    Gibbons, R. (2005). Guidelines for teaching students with visual impairment and autistic spectrum disorders. In Pring, L. (ed). Autism and Blindness. London: Whurr.

    Hobson, R. P., Lee, A. and Brown, R. (1999). Autism and congenital blindness. Journal of Autism and Developmental Disorders, 29 (1) p.45-56.

    Hobson, R. P. and Lee, A. (2010). Reversible autism among congenitally blind children? A controlled follow-up study. Journal of Child Psychology and Psychiatry, 51 (11) p.1235-1241.

    Jordan, R. (2005). Educational implications of autism and visual impairment. In Pring, L. (ed). Autism and Blindness. London: Whurr.

    Macleod, H. and Curtis, H. (2010). Autism and visual impairment: multidisciplinary assessment and intervention – how and why. In Children who have visual impairment and autism conference. London, Thursday 18 and Friday 19 November 2010.

    Salt, A. (2010). Visual impairment and autism: diagnostic approaches. In Children who have visual impairment and autism conference. London, Thursday 18 and Friday 19 November 2010.

    Tadić V., Pring, L. and Dale, N. (2009). Are language and social communication intact in children with congenital visual impairment at school age? Journal of Child Psychology and Psychiatry, 51 (6) p.696–705. Online version available at: www.onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.2009.02200.x/abstract (Website accessed 7 February 2011. The abstract to the article is freely available. To access the full article online, a subscription is required.)

    Written by Ian Bell
    Specialist independent speech and language therapist  and former project leader of the Visual Impairment and Autism Project