PREPARED BY HEATHLANDS LANGUAGE UNIT, BIRMINGHAM

What Is Autism

If your child has Autism this means he or she has specific problems in the areas of sociability, language and play. Autism is not a disease, it is an impairment or developmental problem, which improves with age and help.

Autism is no longer thought to be a rare disorder. Present research suggests that about 1 per 1000 children have Classical Autism and as many as 1 per 125 children have Autistic Spectrum Disorders, that is, milder forms of Autism.

Children with Autism often have more generalised learning difficulties too. Your child's progress will also depend on the extent of these other difficulties.

It is not always easy to assess the extent of your child's learning difficulties in the pre-school years. Obsessions and rituals can interfere with learning or co-operating with adults. Your child's ability to learn through practising activities of his choosing, often gives us a better idea in the early years than any formal tests.

1. SOCIABILITY

In some ways people with Autism behave like small children. They find it particularly difficult to understand other people. They are therefore egocentric or self-centred. They do not like to be directed by adults unless the activity is simple, familiar and important to them. They may also use adults like objects simply to get what they want. Although children with Autism may demonstrate special attachment to carers they often wander off too easily. Losing a child who has no sense of danger and cannot report problems can make shopping, for example, a nightmare.

Young children with Autism rarely take an interest in other peoples needs. They often respond by screaming and kicking if they cannot have their own way. They find it difficult to play appropriately with children of the same age. They cannot share, take turns or negotiate easily. Cuddling is usually on their terms. Children with Autism may rush to an adult for comfort when distressed but will refuse close contact when it is offered. Some children with Autism cannot be comforted by adults at all. Other children with Autism appear to have unusually high pain thresholds and often do not appear hurt and distressed after serious falls or bumps that other children would cry and need comfort for.

Most able children with Autism have a desire to be sociable but are unsure about how to achieve this. They may approach children inappropriately by hitting them. Rough and tumble play becomes too rough, as they fail to understand the impact of their physical strength. Children with Autism can be unintentionally aggressive.

Some may take an interest in hurting others simply by enjoying the impact and attention this achieves, without understanding the distress their actions cause.

Children with Autism in the main want to be well behaved and tend to achieve this by the satisfaction they gain by adopting clear rules of behaviour, rather than modifying their behaviour in order to please others.

2. LANGUAGE

Young children with Autism often have few real words. Although they can hear, they cannot make sense of voice. Children with Autism often prefer music and singing to spoken words. They often choose to repeat words and phrases without understanding their meaning. Their listening tends to be single tracked so they may ignore you when they are engrossed in doing something. They may appear deaf. They are often frightened of unexpected loud noises like the vacuum cleaner or a bus going by. They usually communicate their fear directly either physically by hitting or vocally by screaming, rather than by communicating through words and gesture. It is sometimes difficult therefore to know why a child with Autism is distressed. Their detailed attention to change is often missed by carers until the pattern of behaviour has been repeated several times.

Some able people with Autism do learn to talk fluently but the content and use of language is rather different from other people of the same age and ability.

People with Autism usually have a restricted range of interests or topics. Their attempts at socialising often include repetitive questioning or conversations. Because people with Autism do not understand what other people think; they are not aware of the need to modify what they say. They can be boring, rude, open and argumentative.

People with Autism also fail to understand the intentions of their conversational partner. They are literal in understanding, e.g.

Question "can you pass the salt?"

Answer "yes"

Action None

People with Autism become distressed by teasing and sarcasm. They find it difficult to share social dialogue. Many able Autistic people restrict their interactions to a small group of people who share their interests which might include computers, maps or electronics.

People with Autism often fail to understand lying. They are often very truthful. They are often vulnerable to the deception of others. They need protection from strangers or bullies in the playground.

3. PLAY

Play is often repetitive, solitary, and aimless. Some children with Autism find it difficult to explore new environments. They may be frightened of touching new substances like paint or sand. Some children explore very quickly and get bored easily. They are restricted in what they can do because they do not understand pretend games or sophisticated games which involve taking turns with children. They often prefer chase and rough and tumble games or playing alone. Some children like repetitive sensory stimulation like watching the same video or feeling soft materials, or putting objects in their mouths. With practice however they may learn to extend their play skills and take an interest in other children. More able children with Autism learn to copy actions from TV and books. Their play can look creative but because the child with Autism cannot put himself into the shoes of others, he fails to develop original storylines. Children with Autism often have a few isolated high level skills, like jigsaws, drawing, building with lego and computers. Others enjoy music and picture books.

4. SAMENESS

Children with Autism can see and hear but they cannot draw this information together into a meaningful whole and abstract what is salient. Without this information at hand they find it difficult to generalise or predict, e.g. a familiar person out of context could be frightening. They like familiarity and sameness e.g. using the same cup, refusing new food and refusing to remove clothing in hot weather. Unfamiliarity can produce rituals and tantrums.

SOLUTIONS

1. SOCIABILITY

Helping sociability should encourage your child to accept close, physical proximity , develop self esteem and awareness of others. This includes making his needs known, playing alongside others, sharing, taking turns from several carers, working as a member of a small group, seeking adult attention appropriately and responding to adult requests.

Attending a nursery or playgroup helps children with Autism accept other childrens' company. At nursery, children with Autism often need extra individual play with adults. Later play with a small group of children in a quiet, distraction free room is best. Children with Autism may also need an environment which offers more secure boundaries and parents may need to bear this in mind when choosing a school. Some children need individual special assistant support. Nursery should contact the education department if this is necessary.

If your child tries to isolate himself at nursery by wandering off or clutching an adults hand ask staff to join in his 'game' or stand near to him so that he accepts an adults presence without walking away or clinging. A child with Autism should not be left to do his own thing all day although he may need some time to himself. Later on staff may help him to join in with other children.

Try not to focus on his unacceptable behaviours e.g. copying other childrens 'bad' behaviour. If carers respond with a loud 'No ......' when a child with Autism climbs into the sand tray he might find the attention rewarding and repeat the action ritualistically, particularly if the constraints of staffing or managing other children prevent staff from playing with him when he is being 'good'. Try to put some time aside to follow him (see under language). Remember too that in many ways as said above, he is just like an 18 months old and although he may appear naughty, he is simply trying to get your attention.

Children with Autism have a way of imposing new rituals very quickly and once established they are very hard to shift. You will have to be on guard against this. Try avoiding unacceptable behaviours by :

1. Making sure there is enough adult support

2. Providing an environment which is reasonably predictable with visual cues to facilitate this.

3. Distracting him rather than drawing attention to negative patterns of behaviour (as already explained).

4. Providing clear non-negotiable boundaries as would apply to younger children in order to ensure his safety.

5. Use reward rather than punishment to secure good behaviours.

2. LANGUAGE

Children with autism have usually been quiet babies (except for screaming). They often babble late after they start 'talking'. You should aim, where possible, to expand your child's range of sounds into a turn taking game. You can do this by imitating his/her babble and waiting for him to respond e.g. a sound turn taking game will help him listen, tune into voice, and understand the impact of communication.

Children with Autism often restrict talking to either echoing or commenting on objects or pictures they see in front of them.

Working on building language

You should aim to encourage his response to your spoken voice with eye contact and expression through games. Help him build up a more abstract vocabulary of words which are not tangible like 'mind', 'action' and 'time' words e.g. 'want' 'sleep' and 'soon', for him to be more able to use these words not only to comment but to obtain need, direct others, share pleasure, negotiate and eventually talk about past events.

You will need to help him understand instructions too and to share simple picture books.

Help him understand the meanings of words by:

a. talking slowly in very short sentences (1 or 2 key words).

b. Accompanying your comments or requests with gesture and props (if he is looking) e,.g. go shopping (holding basket or coat)

c. spending a few minutes each day with selected toys following rather than directing his play. Comment directly and concretely on what he wants, does and feels, e.g. Tom is jumping, Tom wants a biscuit, Tom is cross. We call this Mapping. Adults language is always more meaningful to a child if it is contingent on what the child is doing and thinking.

This kind of talk gives a concrete foundation for the development of real words. Real words rather than echo tend to be used more flexibly and to communicate intent more directly.

Acknowledging all communication intent in this way, verbal and non verbal e.g. if your child drags you to the door, avoid questions like "what do you want"

Tune into his thinking first (remember he does not understand anything going on in your mind, so questions and comments like "what did you do that for?", "no you cannot" are at best a waste of time and at worst confusing.)

It is more important for a child to know that his message has been understood rather than to have his own way.

Say

1. "Tom wants outside"

2. "No outside"

3. "Outside soon" (signing soon)

Once a child has developed a positive sense of himself, therapy may then be extended to thinking about the needs of others.

If another child is involved in squabbling over a toy for example, it may be necessary also to reflect what the other child wants , e.g.:

"Tom wants the car"

Peter says "it's mine".

Listening Games

Although children with Autism respond more comfortably when adults gently tune into their play and thinking, there will be moments when you will be able to encourage a few adult directed games.

Start with activities which you know he will enjoy however simple e.g. blowing bubbles, peek-a-boo, Humpty Dumpty and Ready, Steady, Go.

a. exploring musical instruments (2 sets of about 3 instruments). First give him a free range, then copy the sound he makes. Then see if he can copy you (visually). Can you develop a turn taking game?

b. Try giving instructions.

Can he wait for 'stop and go?' Try with another child or adult so that he can understand your intentions by copying others first.

c. can he anticipate?

Help him build a tower - large soft bricks etc. Make him wait for 'ready, steady,. go'

d. wind up a toy music box. Cover his eyes (demonstrate with another child first) Hide the music box under say a cushion etc. Try and help him locate the sound (this is good for 'space' words too like' in',' on' and 'under').

Using sound and words intentionally.

a. reverse the music game. Can he shout or raise his hand to make you 'stop' and 'go'.?

b. Adult pretends to sleep. child wakes adults up with loud noise. Adult pretends to be surprised.

c. Child and adult in the mirror. Play sound games and make funny faces "where's Tom?" "Can he recognise himself?"

Can he tell you to 'open' your eyes etc.

d. Can he tell the child next to him its his go e.g. 'Peter's turn'.

Find two sets of photographic action pictures. Put one set on the table, put the other set in a box. Encourage the child to take out a picture from the box. Matching two pictures 'the same' will prompt adults to say "yes, eating" followed by "tell Mary to eat" etc. This can be modelled by adults first so the child understands the intentions of the therapist. This game will help your child use a range of action words like, 'walk', 'drink', 'eat', 'sleep' etc. to affect change in others.

e. e.g. When he becomes more proficient in his use of language (consult your speech and language therapist first) you can try games which require your child to give specific instructions to other people.

Collect a box of miniature toys say a horse, a dog, a table, chair car etc.

put the man on the horse or the dog under the table etc.

Take photos :

Can your child match the real objects to the photos?

Can he tell you what to do to make the picture e.g. get horse and man, put man on horse etc.

Language Games

Mapping language onto the child's own actions and needs in everyday situations as well as child centred play routines are the most successful way we know of developing early listening and language skills.

You may however wish to create more structured language learning situations which focus on using language to affect change in others.

When your child feels comfortable sitting next to you or at a table, try formal adult led games.

NB. You may have to begin with non language games first. Try to secure your child's confidence by practising sitting at a table with his favourite toy and other simple sound making cause and effect toys.

(a) Fill a feely bag with three common objects. Say a brush, a cup and a ball. Encourage your child to take the objects out of the bag, one at a time :

i. brush his hair, brush your hair and a doll's hair (if this has any meaning for him). Do the same with the cup and ball , 'drinking' and 'kicking' i.e. encourage action words as above.

ii. Hold hand out or point to object and say 'give me the brush'. If he does not respond, then pick up the brush and give it to him. Help him put it in the bag. Then praise him.. Repeat with other objects.

iii. Repeat game until he understands what to do without gesture.

iv. find photographic pictures of the objects. Help him match the real objects to the pictures (generalising).

(b) Make a photo album of important people in his life. One picture on each page e.g. mum

father

brother

grandparents

nursery nurse

Show him the pictures and ask questions like 'where's daddy?'. Give him the answer immediately.

(c) Introduce new language games through visual channel e.g. matching identical verb pictures or making a composite picture with stick on pictures.

Using non verbal communication

Children with autism do not use enough pre-verbal communication signals e.g. eye contact, facial expressions or pointing. They tend to communicate more directly by pulling or dragging adults.

a. You will help early pre-language skills, particularly looking and smiling, by playing with your child as you would a toddler e.g. tickling him and bouncing him on your lap and playing peek-a-boo type games.

Many babies with Autism spend their first few months either lying in their cots passively or screaming constantly. One way or another they have usually missed this vital period of shared play with adults.

NB Caution. Sensibly limit requests for physical activity e.g. throwing children over your shoulder at 3 years may be fun but it could be exhausting at 8!

Try not to over direct e.g. wait for him to signal his communication intent by moving his body or vocalising for the game to continue. You may have to imput meanings in non intentional signals sometimes too building up an association between action or sound and response from adults. Then map words and gesture onto those actions and sounds e.g. 'more Humpty-Dumpty' (signing 'more).

b. Help his use of gesture by using exaggerated normal gestures when he is looking (you may find it helpful to learn Makaton signs, ask your speech and language therapist) e.g. 'stop', 'dinner', 'toilet', 'home','drink' 'biscuit', 'car' 'want',' soon' are useful ones to start with.

c. If your child demonstrates he wants something he cannot have, e.g. a drink, hold the cup in front of him and point to it. Say "Tom wants drink",

"drink later".

or whatever you think is appropriate e.g. it may be necessary, sometimes, to demonstrate directly that you know what he wants e.g. if he wants to go outside by opening and closing the door.

NB

Always give into his request the first few times he signals his intent if you

can. He is hardly likely for example to persist with asking for a drink if his needs are ignored.

However, acknowledging his demands in a way he understands is more important than giving into his demands. Confrontation is not necessary a bad thing if it heightens his awareness and makes him more aware of your feelings too. Saying 'soon' with a sign helps him understand 'time' too.

PLAY SKILLS

Play should help children with Autism explore their environment, play with people and eventually to understand the meaning of pretence (creative play). Children with Autism often play more comfortably with only a few children and in a room which is not too stimulating visually and auditorially.

Children with Autism sometimes fail to settle in large noisy groups. Parties, congregations and assemblies can be distressing experiences for the families of children with Autism.

Exploration and Early Pretence

a. Fill an old paddling pool or plastic container with lentils and pouring toys. Encourage your child to remove shoes and gradually sit in the pool : You may need to watch very carefully and provide firm limits to prevent your child from eating the lentils!

b. Combine toys he enjoys like cars and play people with new substances like sand.

Push the cars through the sand/lentils, rice, water etc. Cover new substances with cling film (if he refuses to touch) or demonstrate first.

c If he is anxious about touching paint, for example, encourage him to make shapes with different substances first with a stick or a sponge, before using fingers (have a bowl of water near by for him to wash his hands in) You may find it useful to put some flour or talc on the table, or on a tray for him to make shapes with.

d. Make a bowl of bubbles. Can he blow them to you? Can he share the game. Can ask for 'more' or 'blow'. You can play this game in the bath.

e. Encourage him to handle cups and saucers etc. in the Home Corner. Fill them with water, play dough etc. or any other substitute props. Pretend to eat, to drink, "too hot" - (adults must pretend first before children will understand).

f. Encourage games which require an understanding of Adults pretending.

Pretending to be asleep or cross or surprised.

When you child has an understanding of large size toys.

g. Encourage games which require your child to use small play people type toys. Help him arrange a 'scene' and develop a simple plot.

NB Pretence should always be based on real life activities. Avoid fantasy characters from TV programmes.

Pretence should aim to :

1. Reproduce a real life activity e.g. a trip to the park, a birthday party.

2. Use real props first - like empty cartons, bus tickets, money etc.

3. Absence of props - like pouring without water.

4. Substitute props like play doh for food etc.

5. Have a simple story or plot.

6. Be shared with adults first and then children

Turn Taking Games

The importance of games shared with adults and later children cannot be over emphasised. Social turn taking underpins all language and later conversational skills.

a. Try baby games on your lap (peek-a-boo, round and round the garden) Again wait for signals from your child before repeating an activity.

b. Push a car to and fro. Roll or kick a ball to and fro. Include another child when you can.

c. When you sing nursery rhymes with him try helping him to move his body in time with yours by sitting him on your lap or on the floor facing you. Later try using your child's favourite tunes to sing about what he is doing. This sometimes has a greater impact on some children who find it difficult to listen and tune into speech.

d. For older children try sharing and taking turns in formal table top games including :

(a) sharing a cause and effect toy.

(b) making a model with another child.

(c) playing board games with a small group.

HELPING PREDICTABILITY

Children with autism like to keep events the same and under their control because they cannot predict easily.

It would be best if your child attends Nursery School on a regular basis, has the same carer where possible and stays with the same group of children

Changes to help you and your child prepare for school should be done gradually, at a pace he can cope with. Changes should include :

a. Sleeping in his own bed.

b. Using unfamiliar toilets.

c. Getting used to new food and drink.

d. Exploring his environment through new sounds and textures.

e. Coping with new staff and new children.

f. Taking articles of clothing off/putting overalls on under adult direction for activities like painting .

g. Sitting in group activities (always start story time or rhyme time for example with something you know he likes - then take him away - do not allow him to walk away too often.)

h. Help him anticipate unexpected events. Help him by using visual clues e.g. if he likes feeding ducks at the park, take a photo of the park when you go.. Next time you are going, put the photo on the wall and show him before you start out.

At nursery take photos of everyday activities e.g. outside play, story time, dinner-time. Put them on the wall in the sequence they will happen. Show him before hand then remove from the wall after the activity has finished. Put the picture in an envelope for later use. As well as helping him to predict it will help him in the 'here and now' to finish activities because he will know what to anticipate.

HELPING PARENTS

Parents benefit from exchanging ideas and discussing problems. We would advise all parents to attend a parents group and to join the West Midlands Autistic Society and the National Autistic Society. Both provide work shops for parents and give information on schools and appropriate literature and entitlements.

HOME ENVIRONMENT

It is sensible to remove any precious ornaments from your living areas. Develop a safe soft play area with perhaps a spare mattress or cushion on the floor to jump on or sit on comfortably with you. This may seem a luxury but it will provide a place for your child to opt out for a while when he needs to be alone or quiet.

Toys for exploration pretence and motor skills :-

1. Restricted access to sand, water, lentils, talc, playdough etc.

2. Musical toys or empty tins with rice or beans in etc.

3. A large, unbreakable mirror.

4. 'Real' domestic objects - saucepans, plastic cups, dressing up clothes, pretend camera, pretend cooker - for you to recreate 'real life' pretend.

5. Empty food packets, toy food trolley, soft toys and puppets, a doll and pram, plastic fruit.

6. Stacking beakers and large soft bricks,

7. A ball

8. Photo album

9. play people type toys inc. park set, dust cart, room set, farm animals.

For comfort as well as developing concentration through the visual channel try;

10. Activity centre type toys and cause and effect toys.

11. Magna doodle - for helping drawing

12. Photographic picture book about every day activities.

13. Large picture lotto games.

14. Transport and animal in-set puzzles.

15. A train set.

16. A computer.

Drawing Skills and representational understanding

Encourage your child to experiment with drawing. You may need to buy non toxic crayons first. Try and encourage your child to use lots of colours.

Do not draw too much for your child as he/she may refuse to have a go for himself. Try making his squiggles and lines into something first by adding the odd line to make say, a road or a tree.

Help his representational understanding by finding an object first which is of importance to him. Draw the favourite object or toy exactly as it is and colour in. Repeat draw and encourage him to colour in.

Help his drawing development and observation by drawing two identical pictures except for one missing part which he has to fill in.

Help him make playdough or his duplo bricks into 'real' objects like cars, houses, animals or food.

PREPARING FOR SCHOOL

All children with autism benefit from some kind of special educational provision. A few very bright children manage in mainstream with individual support but the majority of children with Autism need a special school or special unit. For information on schools which cater for children with Autism, contact the Autistic Society and speak to your Educational Psychologist.

In any event your child will probably need a statement of special educational needs. This is a legal document compiled by your education authority which considers education reports , medical reports and parental views. The Education Department makes recommendations for your child's education based on these views .

Your will be invited by your Educational psychologist to look at various schools and make a choice. If your local authority has no provision for children with Autism you can look outside your local education authority.

Once a statement of need has been completed and your child allocated a school, the statement is reviewed at regular intervals. This gives you and the staff a chance to propose changes if necessary.

Statementing is usually initiated after consultation with parents. Doctors or teachers usually make initial requests to the education department. Statementing is usually completed after a series of assessments and intervention programmes now called "The Code of Practice"

In any event the sooner statementing is underway the sooner your child goes on a waiting list for your preferred school. Many schools have full time nursery provision too.

Choosing a nursery school before statementing begins is often the most trying period for families. Young Children with Autism are often demanding, unresponsive, and unco-operative in public places as well as at home. Parents often need respite but feel they cannot leave their child unless carers understand the implications of caring for a child with Autism. Considerations include :-

1. Providing a safe environment.

2. Constant adult supervision.

3. Caring and non punitive staff who provide clear boundaries.

4. A willingness to help.

5. A knowledge of Autism.

6. A small structured group.

7. Opportunities for engaging in early child centred play routines.

8. The Autistic Society and your educational psychologist are best able to help you. Some parents prefer small playgroups, others find willing Social Service Nurseries with high staff : pupil ratios more successful. Some parents have used the extra money from the Disability Living Allowance to pay for part-time private nursery.

Early diagnosis, supported swiftly with opportunities for the child with Autism to socialise in a supportive environment will ensure he or she will make the transition to school with confidence.

MARGO SHARP

PRINCIPAL SPEECH AND LANGUAGE THERAPIST

November 1994

(revised August 1995)

MS/sjw

Updated 10/2002: Margo Sharp is currently not based at the Heathermount School. Latest known contact information: eMail -- MARY.RICHARDS@bhamchildrens.wmids.nhs.uk * Telephone 0121 243 2000.