It's a lonely world lost in language

Even a simple question can be mystifying for pupils suffering from semantic pragmatic disorder. But are schools equipped to cope?
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Annie is 10. She is small, with a sweet, pretty face. The only unusual thing I notice about her is her hairstyle - she has a long, sweeping fringe and wears her hair tied in bunches. But a few minutes into her therapy session, Annie shows she is quite different from other children.

Annie is 10. She is small, with a sweet, pretty face. The only unusual thing I notice about her is her hairstyle - she has a long, sweeping fringe and wears her hair tied in bunches. But a few minutes into her therapy session, Annie shows she is quite different from other children.

Her speech is clear but sometimes she laughs loudly and inappropriately. She comes out with phrases which just don't fit the conversation. Her mother says something, and Annie replies "thank you for bringing that up" - not a phrase most 10-year-olds use spontaneously.

A casual observer would think "cute" at first, then "precocious and cheeky"... and eventually that there was something very odd about her communication.

Annie has semantic pragmatic disorder (SPD), which may affect one in every 100 children, more often boys than girls. It may be a genetic problem, or linked to allergies, or metabolic difficulties, though the exact cause is not known. But one thing is clear - children with semantic pragmatic disorder can become seriously isolated from their peers. Some get labelled troublemakers or disruptive because of the difficulties they have with communicating.

SPD children present a puzzle for professionals used to measuring performance with tests. Many SPD children do well on structured language tests, but in real life fail to understand questions such as "What are you up to?" or "Can you pass the salt?". The implicit meaning is missed, even if the literal meaning is understood.

Our day-to-day language is peppered with idioms, double meanings, metaphors and other potential confusion - the task of keeping up with conversation becomes nightmarish. Consequently, these children can become very anxious, unless they're told explicitly what to do.

One boy suffering from the disorder was terrified after hearing "you've got the devil in you" - he took it literally. A girl heard about someone "crying their eyes out"... and thought they'd have no eyes left.

"Autistic spectrum disorders often co-exist with other difficulties such as dyspraxia, dyslexia and attention-deficit problems," says language therapist Cath Clayton, from Birmingham's Parkview clinic, a regional centre for child mental health, where specialist therapy is available for SPD as well as other autistic spectrum disorders. "Picking up the difficulty early is important. Too often, children with SPD can be labelled naughty, or disruptive, or emotionally disturbed. Their social comprehension problems can be well hidden. Some children aren't disruptive. They sit quietly and copy other children's activities, and draw attention to themselves only when they make social gaffes."

Over time, this struggle to keep up can impact on a child's self-esteem. Many SPD children have additional problems such as anxiety or depression which need specialist therapy in their own right.

Annie had problems at school from the beginning. She never settled at nursery, and when she went to playgroup instead, leaders described her as "isolated". At infant school she made no attempt to talk to anyone for the first six months.

Her mother feels she was labelled as "naughty" a lot of the time. She had some extra support in year 1, for specific tasks such as handwriting, but this ceased in year 2. She became increasingly unhappy at school, and in the end her parents decided to send her to a private school with small classes, which has a fairly regimented approach to routine. "This suits her much better," says her mother.

Annie's reading and writing are above the level expected for her age, though her comprehension is often poor. Her parents have had difficulties in getting Annie recognised as having special educational needs, though in the end this has been done - after a lot of pressure, and two separate tribunals.

The impetus has always come from them, they feel, with teachers recognising Annie has problems, but not understanding how to deal with them. "You have to work very hard to get the system to work," says her father.

Annie has been receiving specialist therapy for her difficulties for a year now and, say her parents, it's made a real difference to her. She is less anxious and withdrawn. Before, she had been diagnosed with depression associated with her difficulties. She's now coping better at school and, as her therapist wrote in an update, Annie's outlook has become "more positive, and she is perhaps a little more self-assured in the world outside her family".

SPD children have a special educational need, but there may be difficulties for sufferers in having their needs understood by local education authorities. "For instance, the current idea that children with special needs should invariably be in mainstream schools may be quite wrong for a some children with autistic spectrum disorders," says language specialist Angela Wilson, one of Annie's therapists.

"Putting a child who can't interact with others in a crowded, confusing environment is more likely to hold back his or her learning, and make them anxious." Nevertheless, most SPD children can do well in mainstream schools, if those schools have training that allows for the level of extra support needed.

Parkview clinic therapists believe a specialist speech and language assessment should be made every time a child is investigated for behavioural disturbance or learning difficulty. "The research shows a vast number of children receiving psychiatric treatment have underlying language disorders such as SPD," says Cath Clayton. "Getting the right assessment can make any subsequent psychiatric therapy far more effective."

SPD is a developmental disorder and does tend to improve with age and help; though the "difference" may never go, it can be minimised. Adults of normal or high intelligence with SPD may be regarded as eccentric or "odd". With intervention early on, say the specialists, this improvement can be maximised.

At school, Annie has problems with some of the other girls. "They call me weirdo, crazy, and freak," she tells her therapist. She is friendly with some of her classmates, but the relationships are fragile; they founder when misunderstandings arise, or when Annie doesn't say or do what other children expect. The name- calling distresses Annie, and she has had to learn to stand up for herself. "I tell them I don't like it when they do that, and I'm not going to put up with it," she says defiantly.

Part of Annie's therapy involves talking about feelings, and helping her assess her own reactions and other people's. She keeps an account of her days, marking them from bad to good, on a scale of 0 to 10.

This allows her to realise there are shades of "badness" in her life, and if something bad happens - like name-calling - it doesn't have to ruin the day.

"What happened then, Annie?" asks the therapist, pointing to a day which scored two.

"Kate threw the cricket bat and it hit me."

"Why?"

"Because she didn't score any runs."

"How did that make Kate feel, I wonder, not getting any runs?" asks the therapist.

This is difficult. Annie knows people react in cricket-bat-throwing ways when something hasn't happened the way they wanted. But imagining their feelings, and expressing her understanding of them, is not easy. She does, however, after some thought, and some false starts where she just repeats the fact that Kate failed to get runs, come up with "cross" - and this is, I learn later, something she is getting better at.

"They're jealous of me," she says of the name-calling classmates, "cos I can fence and they can't and I'm cleverer than them."

The fencing? That's Annie's latest obsession. She moves from one obsession to the next, almost all inspired by watching videos. Annie watches the same video 20 or 30 times - and then moves on to another. To her, the video acquires a reality as potent as her real life.

Her father once had to intercept a pickpocketing incident when standing with her in the supermarket queue behind another customer. Annie's obsession at the time was Oliver! - and she was the Artful Dodger.

The current video is The Parent Trap, where there's a fencing scene. The video is where her hairstyle comes from, as does the line "thank you for bringing that up". This delayed echolalia - dialogue repeated later, often with identical intonation and accent - is a feature of children with autistic spectrum disorders.

Much of the warm and friendly session focuses on feelings. Annie is helped to draw a picture story of the day she got her ears pierced - with lots of think and speech bubbles with "feeling" words in them. She manages to express that she felt scared and glad at the same time. For Annie, that's a real step forward. What to watch for: Typical characteristics of a child with SPD

History of early feeding problems

Very fussy about food, especially at home

Likes books but can't follow complex plots or people's intentions

Finds it hard to play and share with other children

Takes everything literally

Can say embarrassing things, for example, gives away family secrets

Doesn't take turns in conversation, and talks at you, usually about his own interests

Egocentric - doesn't seem to understand when he has hurt other people's feelings, but very sensitive when others upset him

Develops obsessions for activities, objects or conversational themes

May have special skills with computers, maths, music or art, for example

Often has excellent memory

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