Reading and literacy development for individuals with Down syndrome

[TODO: summary] …

Learning to read

There is a large research literature on the development of reading skills in typically developing children, much of it consistent but there is still some argument about teaching methods^[1],[TODO: 21] and reasons for dyslexias (reading delays and difficulties in otherwise typically developing children).[TODO: 24],[TODO: 48],[TODO: 49]

There is a general consensus among reading researchers that early reading progresses by establishing two foundation processes, logographic and alphabetic, which lead on to an orthographic phase.^[2] [TODO: 22],[TODO: 50-52]

The logographic and alphabetic skills are developing alongside each other over the first two years of reading instruction.

Logographic reading

Logographic reading is reading by sight, that is whole words are remembered by their visual pattern and a store of readily recognised sight words is established. This is how most beginning readers start and at this stage, before they have mastered the letter-sound links, typically developing children make both visual and semantic errors as they read.^[3]

Visual errors occur when the word is confused with one that looks the same shape or has a letter or letters in common - as in reading ‘hair’ for ‘rain’, ‘gate’ for ‘gun’, or ‘this’ for ‘shoe’.

Semantic errors occur when the child reads a word that means the same or shares some meaning with the target word - as in reading ‘closed’ for ‘shut’, ‘go to bed’ for ‘sleep’, ‘bath’ for ‘flannel’ or ‘ship’ for ‘harbour’. Children with Down syndrome make the same errors as they begin to learn to read as typically developing children. In fact, these examples of visual and semantic reading errors are all real errors made by children with Down syndrome during early reading instruction in their preschool years (and some can be seen on the reading videotapes made by the Portsmouth researchers). They made these errors when reading single word lists, so they had no clues from storylines or pictures to help them.^[4] [TODO: 2] Beginning readers only make semantic errors before they know phonics, i.e. the letter/sound correspondences. A child who knows the letter sounds would not read ‘bath’ for the printed word ‘flannel’, or ‘shut’ for ‘closed’, as they would know the initial sounds would be wrong for the printed words that they are trying to decode.

Establishing a sight vocabulary is an important early step as it gives the child a visual store of familiar words that they can use to help them to understand how letter-sounds and word patterns and pronunciations are linked. Research shows that good visual discrimination and visual memory skills lead to faster reading progress in the first year of instruction.^[5]

!

Over a number of years, children build up this store of the visual patterns of printed words, and as adults, skilled readers read predominantly by sight, as words are recognised very quickly from their visual patterns after years of practice. The speed with which children learn to recognise words influences their reading progress.^[6]

Alphabetic reading

Alphabetic reading is the ability to use phonic knowledge for decoding new words, i.e. by ‘sounding them out’. During their first year in reading instruction, children are learning a sight vocabulary and they are learning phonics. Research suggests that an understanding of letter-sound correspondences is more important for spelling than for reading in the early stages of learning to read and write.^[2] Children learn more about the letters that make up words from trying to write words than from reading. Knowing letter sounds will only help children to guess unfamiliar printed words if they can ‘hear’ the separate sounds that make up spoken words, i.e. that cat can be split into 3 sounds, c-a-t. This skill is called phonological awareness. Not all typically developing children of average abilities can do this and poor phonological awareness skills are the most common cause of reading difficulties in typically developing children.

Using phonics to decode unfamiliar words is more difficult in English than in some other languages, as many English words are not pronounced with a regular link between letters and sounds. For example, save, gave, brave and have, or cough, through, bough, illustrate the difficulties facing children as they try to decode English in print. Island and yacht are more examples, and some words are pronounced differently depending on their meaning e.g. ‘she shed a tear’ or ‘she has a tear in her dress’. There is evidence that children learn to read more easily in languages where the print to sound correspondences are always regular.

However, children with good awareness of sounds and with good auditory memory skills do learn to read and write faster in English than children with poor skills in these areas. While children with poor awareness of sounds may be disadvantaged at first when they begin to learn to read, good teaching of phonics and spelling activities can teach children to be aware of the sounds in words and improve their phonological awareness.^[7],[TODO: 22],[TODO: 24] This is another example of the reciprocal interaction between skills. It takes about 2 to 3 years of reading instruction for children to reach the stage of being able to independently use their phonic knowledge effectively for decoding and spelling, and therefore to be described as alphabetic readers - at about 7 to 8 years of age in the UK.[TODO: 22]

The final stage, reached later, Frith described as orthographic. Children now associate sound patterns with morphemes (regular units of sound larger than phonemes) such as ing, tion. Researchers have also drawn attention to the fact that many words can be divided into onset and rime, as in c/at, p/at or r/ing, str/ing, and that this may be the most useful level of analysis for children. Once they see the regularly spelled and pronounced units, they can read new words by analogy with ones they already know with the same letter groups in them.^[8] [TODO: 54]

Language knowledge and reading comprehension

There is a third area of knowledge or skill that will influence reading progress and that is language knowledge. The more vocabulary and grammar knowledge that a child has the faster they will learn to read. Language knowledge will assist the child in guessing an unfamiliar word when reading a sentence, in one of two ways. If the child sounds out the letters of the word, they will only be able to guess the word if it is one already known in the spoken language of the child and it fits into the meaning of the sentence. Letter sound knowledge and context - understanding the meaning of the text - are often used together by a child to identify the word.

The purpose of reading is to understand or gain meaning from text, therefore there is little point in reading if you do not understand the text. Reading comprehension difficulties are quite common in the classroom and often linked to poor language knowledge and poor listening comprehension skills for age.^[9] [TODO: 56] There is less agreement between researchers about the role working memory skills play in reading comprehension, but limited working memory capacity is likely to affect the ability to process text with meaning.

A number of studies have identified that children with speech and language impairments in relation to their non-verbal abilities have difficulty with literacy.^[10–15] These children typically have poor working memory skills for age as well as speech and language delays.

Recent studies have also identified that children with limited working memory skills for their age, have difficulties with literacy and numeracy, in the classroom. [TODO: references 63]

Summary

Good visual and auditory memory skills and good language knowledge help the beginning reader. Over the first two years of reading instruction children build up a sight vocabulary and master the letter-sound correspondences to a stage when they can use them to decode an unfamiliar word and to begin to spell correctly. Once children begin in reading instruction, learning phonics will increase their awareness of sounds in words and their speech discrimination skills. They will also learn new vocabulary and grammar from reading. In other words, there are reciprocal relationships between spoken language, auditory and visual discrimination, memory skills and reading. Once the children start to read, reading activities develop these other cognitive skills.

Reading and literacy development for individuals with Down syndrome

Reading research is in its infancy

While there has been a steady increase in studies of reading development in children with Down syndrome over the past 15 years, there is still only limited information available to guide parents and teachers, as most studies describe the reading achievements of small groups, using limited measures and with little or no information on the type or intensity of reading instruction given to the children.

One reason for the limited amount of information available on the reading abilities of children with Down syndrome is that until recently it was assumed by most professionals that most of the children were not able to learn to read and consequently, the majority of teenagers and adults with Down syndrome alive in the world today have never had the opportunity to learn to read. Parents have been fighting this view for many years and publishing reports of the literacy achievements of individuals.^[16] [TODO: 64-66] Smith [TODO: 67] conducted a survey of 160 parents of children with Down syndrome in the UK in 1976 and reported that many of these young people had been taught to read and write to a useful level by their parents, usually with opposition from professionals. The case studies presented by the author and her colleagues in their publications before 1995 were also reports of children who had been taught to read by their parents, with support from the research team.

Professionals in the USA, Australia and the UK working in experimental intervention and education programmes have been aware of the potential for literacy development for children with Down syndrome for at least twenty five years^[4],[TODO: 2],[TODO: 38],[TODO: 68-70] but the special education facilities available to most children have been slow to introduce effective literacy teaching into the curriculum.

At the present time most studies simply describe the reading achievements of rather small groups of children and young people^[17] although some review articles do go beyond describing practical experience and case studies and include discussion of the practical and theoretical significance of learning to read [TODO: 3],[TODO: 4] and articles addressing the issue of the cognitive strategies that the children are using to read [TODO: 12],[TODO: 13],[TODO: 71],[TODO: 72] are beginning to appear.

Reading is a skill that needs to be taught and until all children with Down syndrome have access to appropriate literacy teaching, from preschool and primary years, it is not possible to determine what proportion of the population can achieve a functional level of literacy nor the range of achievement that may be possible.

In the UK and in most countries until recently, the majority of children with Down syndrome have been educated in special schools for children with significant learning difficulties. In these schools literacy teaching was usually limited to teaching a social sight vocabulary to teenagers; that is, a sight vocabulary of the words that may be useful in getting about their environment such as ‘ladies’, ‘gents’, ‘exit’, ‘bus stop’, ‘police’. Introducing literacy teaching at the usual age in the UK of five years was not considered appropriate for children with Down syndrome.

Fortunately this situation is changing rapidly in the UK and in many other countries. In the UK over the past ten years, increasing numbers of children with Down syndrome are being included in mainstream education. Between 70% and 80% now start school in the same neighbourhood primary schools as the typically developing children in their community from five years of age, with appropriate additional support, and having the same access to literacy teaching from five years of age as all other children.^[18] For the first time, it has become possible to begin to study the literacy development of truly representative population samples of children with Down syndrome and a longitudinal study of 24 children with Down syndrome in mainstream schools over a four year period has recently been completed.[TODO: 12],[TODO: 25] The results of this study are being published and some of the findings are discussed below. This is still a very small group and there is an urgent need to study the progress of larger numbers of children and to document the reading instruction that they are receiving. Another 5 year longitudinal study is in progress in the north of England,[TODO: 74] involving 45 children with Down syndrome, age range 7 to 17 years, all in mainstream education. This study is following the children’s progress with a variety of reading and phonological skills measures. It is also comparing the effectiveness of different teaching strategies on the children’s progress, one of which has an emphasis on phonological skills training. This study should provide very useful information for teachers and parents.

However a review of the existing data may give some indications to guide educators and serve as a baseline against which future achievements can be compared.

Levels of achievement

Individual case studies

The functional literacy skills of individual children with Down syndrome were being reported as early as 1961 by Butterfield^[19] and 1964 by Seagoe.[TODO: 64] The young men described in these papers had been taught by their parents as had Nigel Hunt, who had his diary, The World of Nigel Hunt, published in 1966.[TODO: 65] The foreword to this book, written by Nigel’s father, describes the difficulties he experienced when trying to convince the educators of the time that Nigel could actually read and write!

It was the progress of Sarah Duffen as described by her father Leslie^[16] that first drew attention to the possibility that children with Down syndrome could achieve functional levels of literacy and that reading might accelerate speech and language acquisition. Sarah was introduced to reading by learning sight words from the age of 3 years, when she had very little spoken language, and her father observed that the words and phrases that she could read began to be used in her speech. In other words, words she saw and heard were learned faster than words she only heard. At 7 years of age, Sarah had a reading age of 9 years and at 11 years she could read with understanding sentences such as ‘The soloist was not in a convenient position for seeing everyone in his audience’ and ‘Psychology is a science which seems to fascinate both adult and adolescent student’. She could write such sentences correctly, spelling the words correctly. She was reading extensively for pleasure and being educated in a mainstream school. Sarah’s progress suggested that it might be valuable to start teaching children to read from as early as 2 or 3 years of age. A letter from Leslie Duffen, describing Sarah’s progress, stimulated the research team at the University of Portsmouth (Buckley, Bird, MacDonald, Laws, Byrne & Appleton) to begin research in this area in 1981.

Since 1981, they have been exploring this approach and have accumulated a number of case studies of which the following are examples of early readers who continued to have good teaching.

Early readers

! Daniel’s work - age 9 years

Figure 1. Daniel’s work - age 9 years

Daniel was introduced to reading at 2 years and 4 months when he had a production vocabulary of about 50 single words. He learned to read 10 words in two months and these were chosen to build two word phrases for him to read at 2 years 8 months. These were rapidly transferred to his speech, according to the observations recorded by his home visiting teacher^[20]. By 2 years 11 months Daniel was reading six 3-word phrases, which again he rapidly began to use in his speech. At 3 years 4 months he could read 66 flashcards and many 2 and 3 word combinations of these. The next month he was reading simple books and the words ‘and’ and ‘a’ appeared in his speech. At 3 years 6 months he was reading 4 word sentences and at 3 years 8 months he could read 116 words and was speaking in 6 word sentences. Daniel’s rapid progress continued and, at 8 years of age, his reading age was 12 years 4 months and spelling age 9 years 9 months on the school assessment. An example of Daniel’s free writing at age 9 years is shown in [Figure 1].

Daniel finds handwriting difficult and is still printing. He prefers to use a word-processor for writing and wrote the above story on his computer. He reads punctuation correctly but leaves much of it out when writing. He is being educated in a mainstream school and is average in his class for all subjects.

Joni was introduced to reading at 2 years of age, She has been educated in a mainstream school and has excellent support from her family and from her learning support assistant through school. At ten years of age, Joni has a reading age (BAS) of 10 years 10 months, a spelling age (BAS) of 9 years 5 months and reading comprehension age of 7 years 3 months. Her vocabulary comprehension (BPVS) was 6 years 3 months and her grammar comprehension (TROG) was 6 years 8 months. Her free writing is shown in [Figure 2].

! Joni’s work - age 10 years

Figure 2. Joni’s work - age 10 years

Louise was introduced to reading at 3 years 2 months when she learned to read her family names, ‘Mummy’, ‘Daddy’, ‘Stephen’ and ‘Louise’ by playing matching games. Two months later, she learned ‘car’, ‘book’, ‘shoe’, ‘teddy’, ‘ball’ and ‘dolly’. At 3 years 7 months ‘walking’, ‘sleeping’ and ‘drinking’ were added and she read two word phrases such as ‘Louise walking’, ‘Mummy sleeping’. Louise’s mother and speech and language therapist worked together, making simple books and a dictionary of pictures into which Louise had to slot the words into the right pages. At 4 years 4 months she could read 35 single words on flashcards and some two word sentences. She could also pick out known words in storybooks. Two months later, she could read more than 60 words and short phrases, in games, in full sentences and in books. She was also able to memorise and say whole sentences that she had previously read. At 8 years 8 months, Louise had a reading accuracy age of 7 years 4 months and reading comprehension age of 6 years 8 months on the Neale Analysis of Reading Ability. She was progressing well with both reading and writing, forming capitals as well as lower case letters in joined handwriting.

Alistair learned to read in the same way as Daniel, Joni and Louise. At 10 years 8 months he had a reading accuracy age of 7 years 11 months and comprehension age of 6 years 9 months on the Neale. An example of Alistair’s writing is shown in [Figure 3].

! Alistair’s work - age 10 years

Figure 3. Alistair’s work - age 10 years

Writing and spelling progress shows considerable variation among the children. In the UK the children begin to have spellings to learn and spelling tests from their first year in school at age 5 years. Our observations indicate that early on the children are ‘visual’ spellers. For example, one pupil’s teacher reports that at 6 years she writes the word, looks at it to see if it looks right and if not corrects it. At 7 years, Daniel was still a ‘visual’ speller but at 9 years is reported to be a ‘phonic’ speller by his teacher.

Data by Byrne [presented later in this module], indicates that spelling abilities are usually close to word reading abilities for many children with Down syndrome, but that reading with comprehension is delayed relative to reading age. This issue will be discussed fully later.

While case studies such as these are valuable, it is not possible to predict from them to the potential for literacy for all children with Down syndrome. The children described have benefited from early intervention at home, continuous teaching from their parents and mainstream schooling. However, recent research from Australia^[21] indicates that at least 60-70% of adults can reach 8-9 year levels with appropriate teaching.

The Portsmouth researchers report that they have worked with other children who made the same pre-school progress but who received no further literacy teaching in their special schools so can read no more as teenagers than they could as 5 year olds.^[22] More examples of children’s work can be seen later in this module.

Early reading and later achievements - a letter from a mother, November 2000

I thought you might like to hear some great news about my son whom you encouraged to read back in 1986. Francis was born in October 1983 so he turned 17 some weeks ago - and the good news is that he passed 6 GCSEs in the summer!!

They are English - G - but no one expected him to get that one - French, music, and 2 sciences at E and history D. He has been at Heathfield Community College and is a great credit to them. But I also want to thank you because I truly believe that his early start in reading, and the confidence it gave him, have been of material help. And your encouragement and the discipline of recording his progress at age 2-3 absolutely kept me going. We then lived in County Mayo, Ireland. So - from the bottom of my heart - THANK YOU!

Group studies

Two studies published in the UK in the 1980’s indicate reading progress in the first years at school. Casey and colleagues^[23] followed the progress of 36 children with Down syndrome, chronological age 3 years 8 months to 10 years, mental age 2 years 3 months to 6 years 8 months; 18 were in mainstream placements and 18 in schools for children with moderate learning difficulties. The children did not differ in cognitive development at the start of their schooling. After two years, 89% of the girls and 67% of the boys in the mainstream classrooms could achieve above baseline scores on both the accuracy and the comprehension components of the Neale Analysis of Reading Ability. The children in the special schools were lagging behind with 89% of the girls and 33% of the boys scoring on accuracy and only 44% of the girls and 33% of the boys scoring on comprehension. As the children were equally able at the start of the study, it is likely that the difference in reading progress two years later is due to differences in the teaching of reading in the two school types.

In a study of 58 children with Down syndrome in Manchester, Lorenz and colleagues^[17] report that at 5 years of age, 47% of the children could read their own name and 19% could read 5-10 words, at 6 years the figures for these two levels of attainment were 63% and 32%, at 7 years, 75% and 44%. In a later survey of 117 children, age range from 6 to 14 years, also from this Manchester cohort, only 20 children could achieve a score on a standardised reading test.[TODO: 30]

Follow up studies

Studies from Australia and New Zealand report on small samples of children followed up from early intervention programmes. For a group of 8 children with Down syndrome (CA 7 years 2 months to 9 years 3 months), (IQ 48 to 67), reading ages of 6 years 1 month to 9 years 3 months are reported.^[24] [TODO: 76]

Some of the children from this early intervention group are included in a study of the literacy skills of 30 Australian adults published in 2001.^[21] This study reports on the reading and language achievements of individuals from age 18 to 36 years, with most of them being between 18 and 24 years. The average reading ability of the group, measured with a reading assessment which taps all aspects of reading skills, was 8 years 1 month, range 6:7 to 11:0. Those over 24 years had lower achievements than the younger individuals, who had had better educational opportunities. Only one individual could not score at all on the task. The average reading score was higher for those who had been in mainstream education, 8 years 9 months compared with 7 years 7 months for those from special education settings, however of the 14 ‘very good, fluent and expressive’ readers[11: p82], 7 were from mainstream and 7 from special education. These fluent text readers are also reported to have good, intelligible spoken language, though overall speech clarity and intelligibility was better for the adults who had been in inclusive settings, supporting the similar findings of Buckley and colleagues.[TODO: 16]

Only 4 of the 30 adults could not attempt the text reading task. The average language comprehension score for the group on a vocabulary test was 7:2, with 2 very high scorers achieving scores of 17:8 and 16:6. The best readers had the best language scores and the individuals who had been introduced to reading in preschool had the highest reading scores as adults. The authors note that the whole group showed interest in reading and drawing activities in their leisure time. Two of the group had been actors in a TV series and had learned their scripts, with reading and language ages between 8 and 10 years.

Irwin^[25] reports on 21 children with Down syndrome aged 9 years 6 months to 11 years 6 months in Auckland, New Zealand. 9 could score on standardized reading test (Neale Analysis of Reading Ability) with scores ranging from 7 years 3 months to 10 years on reading accuracy. Their Stanford Binet IQs ranged from 36 to 63, their mean score on the Peabody Picture Vocabulary Test (vocabulary comprehension) was 52.56 months with scores ranging from 33-79.

Surveys of achievements

In a survey of 90 teenagers in the UK in 1987,^[26] parents reported that 66 of the teenagers could read at least a ‘social sight’ vocabulary. Of these 66 readers, just half could read more than 50 words and 15 (16% of the total group) could be described as quite good readers and enjoyed reading books, including adventure stories and books on sport or nature. In this study, many parents commented that their teenagers attempted to master the TV, sport and pop pages of the newspaper and that even those unable to read, enjoyed looking at books and being read to. Carr [TODO: 78] reporting on a group of forty-three 16 year olds in 1982, state that seven could read quite well, about the same proportion of the group as that in the 1987 study.

In a survey of 33 young adults with Down syndrome in the USA aged 17 to 25 years, Fowler,^[27] reports reading ages of 5 years 7 months to 16 years for word attack skills, 6 years 7 months to 12 years 7 months for word identification and 5 years 6 months to 8 years 4 months for reading comprehension. These young people had mental ages of 5 years to 7 years 1 month, vocabulary ages of 6 years 1 month to 11 years 1 month and grammar ages of 5 years 1 month to 7 years 8 months. The reader will note that reading comprehension is close to grammar comprehension and word reading close to vocabulary age. Reading performances all range above that which might be predicted from mental age measures.

The reader is reminded that the data from all these studies and surveys is difficult to interpret as many of the children studied will not have been taught to read. We certainly cannot assume that all the children and young people had reached the upper limit of their reading ability. All the studies have very small sample sizes and it is not clear how representative the children are of the whole population of children with Down syndrome. Intervention studies have often involved children of parents with higher than average educational levels. None of the published studies provide any information at all about the methods or intensity of reading instruction except some of the individual case studies.

Current research in the UK

Some studies of larger and more representative samples of children with Down syndrome in mainstream education are now underway in the UK.

In one longitudinal study, the Portsmouth research team have followed the progress of 24 children with Down syndrome (10 girls and 14 boys, CA 4 years 11 months to 12 years 7 months, mean 8 years 2 months) and compared their progress with a group of their mainstream classmates who are matched with them on reading age (and are therefore slow readers for age), as well as a group of classmates who are average readers for their age.^[28],[TODO: 4],[TODO: 12],[TODO: 25],[TODO: 79] The study has charted the reading, writing and spelling progress of the children, looking at the cognitive strategies they are using to read and the links between reading, language and memory skills. These children are fully included in the classroom and receive similar literacy teaching to their peers, with the support of a Teaching Assistant.

At the start of the study, [Table 6] shows that all the children with Down syndrome were learning to read and their reading ages range from 5 years to 8 years 5 months for word reading, 6 to 7 years for comprehension and 6 years to 7 years 2 months for spelling. Vocabulary ages range from 3 years 7 months to 5 years 4 months, and grammar ages from 4 to 5 years. The children with Down syndrome have reading ages higher than their language comprehension ages would predict.

Table 6. The cognitive profiles of the three groups of children at the start of the study (Age related scores years.months)^[29] Reproduced with permission

The typically developing children identified by their teachers as average readers for their age demonstrate even and age appropriate cognitive profiles over all the measures, whereas the slower readers for their age in the same classes (matched for word reading ability to the children with Down syndrome) turn out to be significantly delayed relative to the average readers on all the language and cognitive measures. The children with Down syndrome, while matched with the slower readers on the reading measures, are significantly behind them on the number, language and memory measures. In other words, the children with Down syndrome show advanced reading ability compared to all their other cognitive skills at this time.

By phase 3 of this study, two years after the first assessments, the children with Down syndrome are still not significantly behind the slow readers on word reading but they are on spelling and reading comprehension [Figure 4] Byrne also assessed the children’s understanding and use of phonics, using their ability to read non-words as a measure of alphabetic skills. The children were asked to read words presented on the computer screen. The children with Down syndrome were as able as the slow readers to read content and function words (see box) but as a group, [Figure 5] they were significantly behind the slow readers in their ability to use phonics, so appear to be keeping up their good word recognition skills by relying on visual memory and logographic reading.[TODO: 12]

! Progress in word reading

Figure 4. Progress in word reading (BAS Reading)^[30]

! Ability to read words and non-words (alphabetic skill)

Figure 5. Ability to read words and non-words (alphabetic skill)^[30]

However, at this point, 7 of the children with Down syndrome have alphabetic skills, i.e. they can read some non-words correctly, demonstrating the ability to use their phonic knowledge [Figure 6] These children have mean word reading age (BAS I) of 8 years 8 months, range 7 years 4 months to 9 years 10 months (CAs 8 years 10 months to 11 years 4 months), mean reading comprehension age (WORD) of 7 years 8 months, range 6 years 6 months to 7 years 6 months, mean spelling age (BAS) of 8 years 5 months, range 6 years 9 months to 8 years 4 months, mean vocabulary comprehension age (BPVS) 5 years 8 months, range 4 years 5 months to 8 years 11 months, mean grammar comprehension age (TROG) of 5 years, range 4 years 6 months to 5 years 9 months, mean number age (BAS) of 5 years 5 months, range 5 years 3 months to 5 years 11 months. A further 9 of the children with Down syndrome are described as logographic (sight) readers and they have mean reading, reading comprehension and spelling scores between 6 and 7 years on standardized tests. The remaining 8 children with Down syndrome have reading, comprehension and spelling ages between 5 and 6 years. At this time, it is not possible to determine why some children with Down syndrome are making better progress with literacy. There was a tendency for the alphabetic children to be the older group, but the age differences between the 3 groups was not statistically significant.[TODO: 12]

! Relationships between reading, language and number skills.

Figure 6. Relationships between reading, language and number skills.

After 4 years from the start of this study, 17 children with Down syndrome, still in mainstream schools and in the research area, were followed up. [Table 7]illustrates the wide range of individual differences in progress on all the skills measured. At this time their chronological ages ranged from 9 years 2 months to 14 years 5 months (mean 11 years 5 months).Their word reading ages range from 5 years 5 months to 9 years, mean 7 years 2 months, spelling ages range from 6 years 1 month to 9 years 11 months, mean 7 years 4 months, reading comprehension ages range from 6 years to 7 years 6 months, mean 6 years 1 month, vocabulary ages range from 3 years 2 months to 12 years 2 months, mean 6 years and grammar ages range from 4 years to 5 years 9 months, mean 5 years. Nine of these children had reading ages over 7 years 4 months and 8 of the 9 had spelling ages over 7 years, with reading comprehension for the 9 ranging from 6 to 7½ years.

Table 7. Individual profiles for children with Down syndrome (Year 5 of study)

All of the 17 children could score on standardized word reading tests, 16 could score on spelling and 14 on reading comprehension. If this data is compared to the studies carried out in the UK with earlier cohorts of children^[23] [TODO: 30] then this Hampshire group are clearly achieving much higher rates of literacy acquisition than the cohorts of the 1980s or before. These children have many more years of education in school and further education ahead of them. Half of them are showing independent reading skills at a level to give them functional literacy as adults and it is likely that 60-70% will reach this level by adult life.

Two conclusions may be drawn at this time. Some children with Down syndrome will achieve functional levels of literacy (8 years and above), others will achieve a level of literacy skill which will allow them to record work in the classroom and to read with assistance. Some may not achieve any useful level of literacy skills. At present the research groups are so small and access to good literacy teaching still not available to all children in the UK. Accurate estimates of what might be expected still need to be documented by studying much larger samples of children.

The effects of an early start

Early reading

The issue of early ‘sight word’ reading, beginning in the preschool years, discussed in the individual case studies, needs further consideration. Some of the early readers with Down syndrome find ‘sight word’ learning very easy and it appears to have very positive effects on the development of their spoken language skills and general cognitive development. Buckley^[4] identifies the need for further research here as critical period issues for language learning may be relevant, especially for establishing the use of grammar and phonology in spoken language.

Recent work shows that preschool children with Down syndrome are able to learn sight words just as fast as age matched typical preschoolers. Appleton^[31] compared the progress of 18 children with Down syndrome with the progress of 18 typically developing children of the same age (2 to 4 years, mean age 4 years 1 month), when their parents taught them to read a ‘sight vocabulary’ with her support. In the first year of the study, both groups progressed at the same rate. After six months the average ‘sight vocabulary’ learned was 15 words for the typically developing group and 17 words for the children with Down syndrome. There were large individual differences in the number of words learned in both groups. Some children learned no words and some learned 66 or 67 words, in both the typically developing group of children and those with Down syndrome. By the third year of the study, when the average age of the children was 6 years 7 months and they were in school, the progress of the readers in the two groups (i.e. those who can score on reading tests) was compared. These readers, 16 of 17 typically developing children and 11 of 18 children with Down syndrome, are readers and they are at the same level for reading and for reading comprehension on standardized tests [Figure 7][TODO: 86]

! Preschool readers - progress at 6 years

Figure 7. Preschool readers - progress at 6 years

This data supports the view that reading ability is a significant strength for children with Down syndrome and that, for many, the visual discrimination and visual memory skills needed to learn sight words are not delayed for their age. At the stage when all children’s reading progress is largely supported by logographic skills (sight word reading), the readers with Down syndrome (61% of the group) are keeping up with their peers on reading and on reading comprehension. Their progress supports the evidence that visual processing and visual memory skills are less impaired than other areas of their cognitive skills and should definitely be used to support all learning.

Summary

A number of conclusions may be drawn at this time from the published research studies and surveys of achievements.

• Some individuals with Down syndrome will achieve functional levels of literacy (8 years and above), others will achieve a level of literacy skill which will allow them to record work in the classroom and to read with assistance. Some may only achieve a limited level of literacy skills, perhaps a sight word vocabulary useful in their daily lives, but this should be valued. At present the research groups are so small and access to good literacy teaching still not available to all children with Down syndrome. Accurate estimates of what might be expected still need to be documented by studying much larger samples of children and linking assessments of their progress with the quality and quantity of teaching available to them.
• Word reading is a relative strength and spelling abilities seem to develop well over time and to be close to word reading abilities. Reading comprehension levels are often significantly behind reading and spelling levels but at a level or ahead of language comprehension levels for individual readers. Reading comprehension abilities have not been studied systematically and research in this area is needed.
• Reading comprehension will be affected by vocabulary knowledge, grammatical knowledge and life experience, working memory skills and word recognition skills - as they are for all readers.
• Phonic skills develop steadily alongside reading progress for many children and, while early reading skills are logographic and built on the visual learning strengths of children with Down syndrome, they show the ability to move on to be alphabetic readers when they reach about the same reading skill levels as typically developing children i.e. word reading at about 7 to 8 years.
• Handwriting skills have not been systematically studied but the examples of children’s work displayed in this module show that many children with Down syndrome can write legibly and develop adequate handwriting.
• Writing text, i.e. putting thoughts and words on to paper, is a skill that varies widely according to the author’s experience and the case examples included in this module illustrate this range. Some children of ten years are writing their own stories but many will be needing support to write their ideas down, even when they are quite good readers. Reading with comprehension and writing ideas and information down are linked skills and helping children to make books and to write about life events and school curriculum projects i.e. to write about experiences that they have had, will help both creative writing and reading comprehension abilities.
• The information and examples reviewed demonstrate that reading abilities are definitely a strength for children and adults with Down syndrome and often their achievements are significantly better than might be expected given the extent of their general learning difficulties (IQ levels) and their speech, language, working memory and motor skill delays.
• Word reading abilities are a strength from preschool years and many children with Down syndrome show the same ability to learn sight words as typically developing preschoolers. Readers with Down syndrome can keep up with typically developing readers in the early years of education.
• Word reading abilities are demonstrated by many children with Down syndrome from as early as 2 years of age and children who are introduced to reading in preschool years attain the highest levels of literacy later. Reading activities from this age can be deliberately used to teach spoken language and there is some evidence to show that reading instruction teaches new vocabulary and grammar, increases world knowledge, improves working memory development and improves speech clarity for children with Down syndrome. The use of even a small sight vocabulary and reading activities specifically targeted at a child’s language comprehension level can produce some of these benefits.
• Students with Down syndrome can learn to read and to develop their reading skills in teenage and early adult years, and should have access to continued, skilled, literacy teaching.