Autism Spectrum Disorder, or autism, is a set of lifelong developmental differences. Developmental differences affect how someone perceives and processes information, and responds and learns as they grow up. Autism can affect how a person experiences and copes with the world around them.
In medical terminology autism spectrum disorder is defined as a condition where an individual experiences difficulties in social communication and may show restricted and repetitive patterns of behaviour, such as motor mannerisms, insistence on routine, sensory sensitivity and obsessive or unusual interest. Another way of understanding autism is as a natural part of ‘neurodiversity’.
We all have differences in how we think and interact and differences in what we enjoy doing. When these differences lead to an individual feeling less comfortable in certain situations or when these differences lead to challenges in learning or daily living it is helpful to use a terminology (autism, autistic or autism spectrum) that enables that individual to access support where required.
We all communicate differently. We have different accents and variation in the use of words across cultures and countries can lead to miscommunication.
Some of us may be more confident in talking than others. Some may be more animated in the use of facial expression and gesture. Others may feel very anxious with the thought of speaking aloud or may find that others do not easily understand what they are saying.
Some individuals prefer the company of one or two others with whom they have a shared understanding and shared interests.
Differences in social interaction can include finding it harder to understand the subtleties of social situations, recognising and interpreting other people’s feelings, managing emotions or making and maintaining friendships.
When might you suspect that a child or young person is autistic?
Autistic characteristics are usually noticed in the preschool years.
However, for children who might have more subtle features or who are intellectually able, the characteristics may be recognised only when they are older.
There are a range of early signs that parents might report. These may include a child using less eye contact or a delay or difference in speech and language development and communication.
Young children on the autism spectrum may also have reduced non-verbal communication, and may not point or gesture. Some parents notice that their child’s play may be different to that of their peers, they may have difficulty in joining with other children and may prefer to play alone or with adults. Play might be less creative and more repetitive. The child may seem not to be sharing their interest with others.
The world can be confusing and sometimes overwhelming for autistic children. They often find it hard to understand the subtleties of how to ‘read’ and relate to other people. This might mean they may not pick up social cues, or may behave in ways that are considered to be socially unexpected.
Many autistic children find change upsetting and often prefer familiar routines, which increase predictability and help them know what to expect. In school, this may lead to a child being seen as uncooperative or difficult. They might, for instance, become very anxious when asked to sit in a different place in class, or if there is an unexpected change of teacher.
Some children will develop intense interests, which they prefer to engage with most of the time and can become distressed if interrupted.
Sensory sensitivities are common. This can mean a child’s sense of sight, sound, smell, touch or taste is intensified (hyper-sensitive) or under-sensitive (hypo-sensitive). For example, some children can find certain sounds (such as hand dryers) or textures (eg certain fabrics) very uncomfortable and distressing.
How is autism normally diagnosed? How can I get an assessment for my child?
Getting a diagnosis for a child can be helpful, as it enables parents, as well as others, to understand and support the child better.
Diagnostic assessment can also help to clarify if a child requires any extra support or resources for their additional needs. Support from voluntary organizations and opportunities to meet parents of children with similar challenges can also be a source of great support.
If you have concerns relating to your child's development you may contact your GP and request for a referral to be made to your local Community Paediatrician or Child and Adolescent Mental Health team. It can be helpful if you ask school or nursery staff to provide a letter to support this referral outlining any concerns they may have noticed in the educational setting. In some areas this referral may be made directly from education to local Child Development services.
The assessment of autism tends to be conducted at child development centres or by child and adolescent mental health services by professionals such as paediatricians, psychologists, speech and language therapists or psychiatrists.
It usually involves detailed interviews with the child’s parents/carers concentrating on the child’s early development and current behaviour, direct play assessment with the child as well as collecting information from the child’s nursery or school.
How is autism normally supported?
Everybody is different and different children need different things to help them, but after your child is diagnosed with autism, some of the following might be helpful.
Talking to school - you might want to make an appointment to go and speak with the Inclusion Coordinator or SENCo, about your child's needs and any extra support they might require. Some local authorities have autism advisory or outreach teachers who can visit the school and offer advice depending on the level of expertise already in your child's school.
Attending a post diagnosis group for parents - most areas run post diagnosis groups for parents of children who have been diagnosed with autism. Different groups cover different topics. Your local offer page on your borough website, the National Autistic Society website, your GP or paediatrician may guide you on how to access your local group.
Build knowledge & access different resources - it might be that you would like to find out more about other people's experiences of autism and approaches to supporting children as they grow older.
There is no known specific medical intervention for autism. However, there have been many useful approaches and programs developed to help the child with specific difficulties which may be impacting on their quality of life or which may be in the way of their optimal development.
Autistic children can be very effectively supported through people around them having an increased understanding of their condition, their support needs and their unique profile of their strengths and difficulties.
Families of children with more severe difficulties may also require some practical support or access to specialist resources to help them to support the child.
There is no ‘best’ intervention for children with autism. An intervention that helps one child may not be suitable for another, so parents should always seek professional guidance.
Parents are advised to be cautious about any treatment that claims to ‘cure’ autism.
What causes autism?
The exact causes of autism are still not yet fully understood.
There is not one single explanation for autism. There is strong evidence to suggest that autism arises through a variety of factors, all of which influence brain development and function. This can include genetic factors, environmental factors and hormonal and biochemical factors.
Autism is not visible on an MRI brain scan. There is no single medical test that can diagnose autism.
Research shows a genetic influence, and traits of autism are more frequently seen in family members of autistic people. Clinical Assessment, Genetics, and Treatment Approaches in Autism Spectrum Disorder (ASD)
Autism spectrum is more common in individuals with genetic differences for example chromosomal anomalies, microdeletions or microduplications (which can be identified through microarray). The way our genes are expressed is affected by environmental factors.
Whole genome sequencing enables scientists to look for single gene changes. Some single gene changes result in alterations in the brain development and/or function. If a child on the autism spectrum has intellectual disability or other physical differences, whole genome sequencing may be offered to look for a possible underlying genetic cause.
The genetic and environmental factors that influence brain development and function are not specific to autism - the same factors that cause difference in brain development may also result in associated conditions e.g. epilepsy, intellectual disability, motor difficulties, mental health difficulties, atypical behaviour.
What to expect as your child grows up?
Autism affects every child in a different way.
Autistic people can live happy, healthy and successful lives. Aiming for a life that suits the individual person is most important, according to their own interests, values, needs, likes and dislikes, and abilities.
When children are young it can be difficult to predict precisely how they will develop as they get older. However we do know that understanding, support and adjustments to the environment can make a huge difference, at home, at school and in the community. Some autistic people need lots of support, while others need less.
Some autistic adults lead independent lives, work and have relationships and families of their own. Some autistic people also have learning difficulties and may need more support with their education, employment and daily living.
There are times in life when an autistic person may experience more challenge, often when there is change or transition, for example, going through puberty, or transition to secondary school or adulthood.
It is helpful to be aware that young autistic people are more vulnerable to developing other difficulties, such as anxiety, depression, sleep difficulties or behavioural problems. These conditions are treatable, so it is important to seek professional advice if concerns arise.
Autistic children have strengths and it’s important that these are celebrated and encouraged, whatever they may be. For example, autistic children can have great attention to detail, be very honest and have a strong sense of social justice. They can be very focused on their interests which can be calming and give lots of joy. Sometimes these can be channelled into developing knowledge and skills in a particular area and be a source of fun and social connection. Some autistic people have abilities and talents that lead to highly successful careers, but they might need reasonable adjustments from others, such as employers, to enable them to cope emotionally and socially.
It is often the child’s strengths and interests that increase their quality of life, even if they are unusual interests.
Many autistic individuals have made unique achievements and creative contributions to a variety of areas including science, art, music, sport and extended our understanding of the world through a different way of thinking and seeing things.
Resources for families and children with developmental impairment /learning disability and Autism or ADHD
Video links for young people
Interesting short video on dyslexia…
Information and advice for parents, carers and family members of someone with a learning disability.
Easyhealth was made so that people know where to find ‘accessible’ health information . ‘Accessible’ information is information that uses easy words with pictures. Also includes auditory links for those with visual impairment. Information leaflets available on Autism, Behavioural problems, Blood tests, Communication
Access to forms and information on disability living allowance
If you’re raising a disabled or seriously ill child, we might be able to help. Grants for essential items. iPad access and training.
The National Centre for Mental Health has produced a library of free factsheets and leaflets on ADHD and Autism. Download free PDF versions of our range of information leaflets
The incredible Years by Caroline Webster-Stratton
Understanding ADHD, Autism, Dyspraxia, Tics and Dyslexia. By Dr C R Yemula
A guide for parents
Can I tell you about Autism? A guide for friends, family and professionals. Jude Welton, illustrated by Jane Telford (for children and young people)
New Social Story Book by Carol Gray
Over 150 social stories with CD containing all the stories in pdf and word format for personalisation. Teaches you how to write social stories.
Successful social stories for Young Children Dr Siobhan Timmins
Conversation Train by Joel Shaul
A visual approach to teaching the basic conventions of conversation to children with ASD.
My Autism Book A Child's Guide to their Autism Spectrum Diagnosis Glòria Durà-Vilà and Tamar Levi
Me and My PDA: A Guide to Pathological Demand Avoidance for Young People Hardcover – Illustrated, 21 Nov 2018 by Glòria Durà-Vilà and Tamar Levi
Social Communication Cues for Young Children with ASD and related conditions. Tarin Varughese.
Collection of social communication cues to enable parents and professionals to help children with social developmental difficulties to navigate their social world .
Why do I have to? Leventhal-Belfer
If you want a child with ASD to comply with a social or family rule, it is important to explain the logical reason to comply. Provides the logic for compliance to help parents and teachers
Writing about feelings by Rozanne Lanczak (Activity book for primary school age children)
Feelings by Aliki Brandenberg (for older primary school children)
Your emotions by B. Moses and M. Gordon ( series of picture books with amusing stories and colourful illustrations for age 5-8 year olds)
The ASD Workbook, Understanding Your Autism Spectrum Disorder (2011) by Penny Kershaw (Designed for parents to use with their children in helping your child to understand their difficulties)
Kids in the Syndrome Mix 2nd edition (2014) by Martin L Kutscher (aimed at professionals, teachers and parents to help understand children who may have ASD as well as other conditions)
Positive Behaviour Strategies to Support Children and Young People with Autism (2007) by Martin Hanbury (Aimed at teaching staff but contains some useful strategies for home too)
“Playing, Laughing and Learning with Children on the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Carers Second Edition eBook: Julia Moore.
Superpowers for Parents (2008) by Dr. Stephen Briers (Psychological approach to parenting children who may have difficulties-not specific to ASD)
When my worries get too big! A relaxation book for children who live with anxiety by Kari Dunn Buron
Can I tell you about Selective Mutism? by Maggie Johnson (for children and young people)