Alton Street Surgery Patient Information Leaflet

Autism

What is autism?

Autism is a disability that prevents or impairs a person's ability to relate to other people. Autistic people do not see or understand the world in the way that most people do. For example, where you see a chair, the autistic person might notice the grain of the wood or the curve of the back and not "see" that the object is a chair. Some autistic people can learn to understand the world from a non-autistic point of view but it's hard work, like learning a completely new language without any clear lessons. Autism varies a great deal from person to person; some people go on to live full and independent lives (there are autistic writers, teachers, and even a qualified, autistic pilot in the UK), others will cope with extra support, and some will need continuous support and special help for the rest of their lives. There are about 115,000 families in the UK who are affected by autism to some degree, and it has a tendency to run in some families. It is three times more common in boys than in girls. Autism can also occur in children with other disabilities, such as cerebral palsy, Down's syndrome, dyslexia or other language problems.

What are the signs of autism?
Autism is usually first spotted by parents who notice their child doesn't respond or behave like other children. It often starts as a feeling that something isn't quite right, but it can be difficult to put your finger on exactly what's going on. There are several signs that your child might show, including –

• Being shut in their own little world - most autistic people show a high degree of personal isolation and don't interact with, or even appear to notice, other people around them or sudden noises near them (one reason why many autistic children are initially misdiagnosed as being deaf)
• Lack of direct eye contact - most children will meet a friendly smile with a smile and look straight at your face. Autistic children have an uncanny ability to look right through you
• Echolalia - copying words and questions parrot fashion rather than responding to them
• Repetitive behaviour - an urge to repeat the same activity or action over and over again. This could be banging a drum, constantly standing up and sitting down, walking round and round in circles, or singing the same song repeatedly. While many normal toddlers go through a repetitive phase, it is much more intense and long-lasting (even into adulthood) in autistic children. Repetitive behaviour can be tiring for even the most patient of families
• Obsessive behaviour - needing to know everything about a particular subject
• Routines or rituals - many autistic people need regular patterns to their lives, such as the sequence that clothes are put on or the bedtime routine having to be followed in exactly the same way every day, in order to feel secure
• Putting objects in straight lines - links in with the need for order in an otherwise jumbled world
• Lack of imaginative play - this is included as a standard observation, but recent research suggests that many autistics do have vivid imaginations, but simply lack the ability to explain it to others
• No sense of danger - such as about the risks of heights, fire and of getting burnt, drowning, or crossing the road
• Light and sound sensitivity - despite being completely oblivious to the phone ringing right next of them or a bright light being switched on, some autistic children react strongly to certain noises or lights. A room of shouting children could send one autistic child running for cover, a flashing pelican light could be a major fascination for another
• Bizarre behaviour - such as laughing and crying for no obvious reason
• Challenging behaviour - can include having screaming fits, pulling things off shelves in shops, kicking, biting, running away, refusing to hold hands, breaking things etc. However, what is challenging to you may not be to someone else
• Limited communication skills - speech is often limited, and autistic children are often late starters (another reason why autistic people are often misdiagnosed as being deaf). Speech is only one form of communication and autistic children often make themselves understood in other ways, such as using gestures, sounds, symbols, grabbing the squash bottle for "drink", etc. You'll know the personal language your child uses to make him- or herself understood
• Difficulty in sleeping - hyperactivity, irregular sleeping patterns
• Difficulties learning new skills - probably because of their need for a very ordered world, which new things disturb

· Special talents in specific areas - about 10% of autistic people are very talented in particular areas, often as artists, mathematicians, or musicians

What can you do to help your child?
The most important thing you can do is to love your child and to show him or her that you do. It can be very hard to cuddle someone who won't even look at you, but keep at it. No guarantees are given for perseverance, but you'll
certainly never know what could have happened if you don't give it a go. As ever, every autistic child is different, so what works for one won't necessarily do so for another, but some of the following ideas might help –

• Keep a diary - write down what you did on days that were good and those that were completely disastrous, and use it to look for patterns. Sometimes it can be hard to see beyond the end of the day, and keeping a record will help you see the long-term picture
• Stick to a routine or pattern if it makes your child happy - attempting to break routines or rituals is unlikely to work and can be a very painful exercise in banging your head against a brick wall. If you do have to break a routine, make sure that your child has any special comfort items or toys with him or her
• Talk to your child - it can be difficult to keep trying to talk, joke, and explain what's going on to an unresponsive child - you never know how much an autistic child is taking in and understanding. Encourage other people to do so too. Don't be afraid to use their language if it helps with communication.
• Play the games or activities that your child will play - either yourself, or with those people with whom your child will interact. Getting social interaction is good for you, and good for your child too, but don't force it if your child wants to stop
• Watch your child - you'll probably have to have eagle eyes anyway as autistic children tend to lack a sense of danger even more so than other children. Watch for other things too, such as how he or she is behaving or responding today, whether he or she has learnt anything new or, indeed, if you have learnt something new about your child
  
  

Where can I get help?
Getting a diagnosis early increases the chances of an autistic child getting the services they need, but unfortunately many parents of autistic children have to become fighters to get the best for their child. Some areas in the UK are better served than others - The National Autistic Society (address at bottom) will be able to help you get access to the services your child needs. Health services, social services, and education authorities should provide the following help:

• Health services - specialist formal diagnosis and assessment (vital if support is to be made available), medical support for related problems such as hyperactivity, help from clinical psychologists and psychiatrists who specialise in autism, and speech and language therapy
• Social services - The Children's Act means that autistic children have a right to support services. A plan to meet the needs of the child should be drawn up and social services should liaise with other professionals and bodies involved in the child's care. Support for parents and their family should be available (respite care and care workers) so that the child can be looked after long-term at home

· Education Authorities - depending on the child's needs, education and special support should be tailored to his or her needs as soon as possible. However, getting a statement that confirms autism may be a battle for parents. Special needs education in a school that specialises in autism is essential in some cases, although some autistic children do thrive in mainstream schools when given the right level of support.

Useful sources of information
The National Autistic Society, 393 City Road, London EC1V 1NG Tel: 020 7833 2299
Autism Helpline: 0870 600 8585

This patient information leaflet has been adapted from an original published by Clinnix Pro, Synigence PLC