ONLINE RESOURCE FOR PARENTS AND CARERS OF CHILDREN WITH
AUTISM
This information is for parents, carers and professionals. It is for general
support and to help increasing awareness of autism in children. It is a very
difficult journey and can be a bewildering experience. Many parents find
themselves isolated in this journey and feel the need for support to cope with
day to day challenges with their child.
The term Autism Spectrum Disorder is used to avoid confusion. It covers a
whole range of presentations from Autism to Asperger Syndrome.
What is an autism spectrum disorder
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition. It is a
widely used diagnostic label. The areas with difficulties are:
1. Social Communication
Language difficulties may range from marked delay in speech to
unusual features – eg inflexible communication, talking about topics
that interest them or that meet their needs rather than a two- way
conversation. There may be paucity in using words, gestures and eye
contact. They find it difficult to communicate what they are thinking or
feeling and they may also struggle to understand other people’s
feelings.
2. Social Interaction
Children with ASD have difficulties in making and sustaining
friendships. There may be difficulty in understanding social rules and
other people’s feelings (lack of empathy). Eye contact may be poor or
of unusual quality.
3. Flexibility of thinking and behaviour
They may have difficulties in pretend play and imaginative activities.
They may have obsessive interests, rituals, repetitive activities and
difficulties with change. Children with ASD prefer games that are
structured.
These three areas are known as “Triad of Impairment”, each individual is
affected to a greater or lesser extent which has given rise to the term
“spectrum”.
Sensory Difficulties
Some children may have difficulty in processing sensations from touch, smell,
sound. Children with sensory difficulties may become anxious which can
cause behavioural difficulties.
In addition there may be altered sensory experiences, namely extreme
dislikes and sensitivity to sounds, certain textures, light touch and movement.
Children show a mix of features across the spectrum. It is important to
identify strengths and difficulties of each child and offer support accordingly.
There is still uncertainty about how broadly Autism Spectrum should be
defined. Different acronyms may be used, if one is uncertain, it is better to
ask the professional for clarification and explanation.
Behaviours
Children with ASD may also demonstrate odd behaviours such as finger
tapping, hand flapping, spinning, and jumping. These are called “motor
stereotypes”. Children may enjoy the sensation it produces or it may relax
and calm them. They may also have these movements to avoid stressful and
distressing situations.
Assessment and diagnosis of Autism Spectrum Disorder
Parents or carers who are concerned about a child’s interaction and
communication should seek advice from their paediatrician/general
practitioner who can then refer the child to a specialist service to do multi
disciplinary assessment for the diagnosis of ASD. The multi disciplinary team
may include the following professionals:
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Consultant Paediatrician with an interest and experience in ASD
A child and adolescent psychiatrist
Speech and language therapist
Clinical/Educational psychologist
Occupational therapist (if there are concerns about sensory issues) or
physiotherapist if there are concerns about physical skills
Specialist advisory teacher or communication team from school
Observation in an educational setting including information from school
teachers.
Health visitors or social workers.
The assessments may include:
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Interview with parents or carers regarding autism specific history using
specific diagnostic tools
Details about pregnancy, early years, birth, development
Detailed physical and neurological examination
Specific tools for autism diagnostic observation.
It may not always be possible for professionals to come to a conclusion on
the first occasion and assessments may have to be spaced out over a period
of a few months. Occasionally the paediatrician may ask for specific blood
tests or brain scans or other specialised tests to look at associated conditions.
Conclusion
Following these above assessments the diagnosis of ASD may be made and
the profile of the child needs and strengths will be made. The interventions
from school and home should be geared towards ensuring that the child is
educated in a suitable setting and that difficulties are overcome and managed
appropriately.
Co-morbidities associated with autism
There may be conditions or difficulties which may be associated in children
who have autism:
1. Additional learning difficulties – the ability to learn in a conventional
sense is affected in most children with ASD, including those with
average or high intellectual ability. In addition, a large proportion of
children with ASD may have additional learning difficulties which can
be moderate, severe or sometimes profound.
2. ADHD – attention deficit hyperactivity disorder. This condition is
characterised by poor concentration, poor organisational and attention
skills. Some of these children can be over active, impulsive and may
have socially awkward behaviour. A proportion of children may have a
dual diagnosis of ADHD and ASD.
3. Anxiety – this condition is quite common in children with ASD. Children
may have specific fears (phobias) or general anxiety because of
changes in routine, communication difficulties or not understanding the
situation. This may present as marked behavioural difficulties or
emotional responses in the form of anger, distress, self injury,
disturbed sleep or altered eating patterns. This can also affect school
work.
4. Attachment disorder – difficulties in relating to other people, forming
and maintaining relationships is commonly seen in ASD. Usually this is
caused by interruption to child’s emotional development in early
childhood as a result of emotional trauma/neglect/separation/constant
change of carers or abuse.
5. Depression – this can happen in children and young people with ASD
at all levels of ability. A family history of depression is a risk factor.
Warning signs may be changes in behaviour, apathy, tearfulness,
sleep problems, aggression or self injury.
6. Dyspraxia – also known as developmental coordination disorder or
clumsy child syndrome. Children may have difficulties with maintaining
balance, controlling movements and coordination leading to difficulties
in feeding, dressing, riding a bike, writing etc. There may also be
verbal dyspraxia which may cause speech difficulties because of
problems coordinating the mouth and tongue movements to make
sounds or put sounds together to make words, phrases and sentences.
7. Epilepsy – approximately 1/3 of children with ASD can develop
epilepsy. There may be different forms and it may be also difficult to
recognise the condition.
8. Fragile-X syndrome – this is a genetic condition which is caused by a
defect in the X chromosome. Children with fragile-X syndrome have
high incidence of associated ASD. They have difficulties in attention
and are easily distracted along with delays in speech and language
and overall development which can vary from mild to severe.
9. OCD (obsessive compulsive disorder) – these children have obsessive
thoughts, they may have activities or routines which they feel
compelled to carry out such as checking lights, closing doors, washing
hands repeatedly. They may also have associated limited social
understanding.
Practical tips on management of children with Autism Spectrum
Disorder
Whilst each child is an individual, the following general approaches may be
helpful.
1. Structure – it would be helpful for the child to know exactly the structure
of the day, what is being planned for the day and how much time and
when the task will be finished and what to do next. It is important to
plan activities for each day. The activities will need a clear beginning,
middle and ending. It is useful to use now and next baskets. Free
choice can be unclear for some children and may cause anxiety.
Spare time needs to be given careful thought as to what the child is
expected to do during their spare time. Many children benefit from
visual timetables which are clear and concise and the children may
want to participate in making this timetable.
2. Consistency and clarity – it is important to check if the instruction has
been understood by the child. It is important to break down the
instructions step by step. Use language that is clear, precise and
concrete.
3. Communication – it is important to supplement verbal communication.
Written plans, photographs, symbols and writings for example visual
timetables are very useful for children with ASD. The carers need to
be calm, matter of fact and in a non-threatening way. As few words as
possible should be used. Allow time for the child to process the
information.
4. Planned breaks – children should have regular breaks between the
activities to avoid exhaustion. Provide clearly defined breaks between
activities. Always allow time to unwind and relax.
5. Recognise stress – children should avoid going in crowded places.
They should have plenty of physical and personal space. Information
overload should not be given and confrontation is not advisable.
6. Use positive experiences – activities have to be made enjoyable with
lots of encouragement. Activities a child likes may be used as
incentives to do other tasks. Use small steps to avoid failure. Use
social stories and other experiences for teaching social skills. Try to
end an activity on a positive note or give regular positive feedback.
7. Managing changes – the carers need to plan ahead and give enough
information in advance using visual cues and symbols regarding any
expected changes. It is best to avoid surprises as they do not tolerate
these very well. New ideas may be resisted initially but can be
accepted over time, giving the child time to consider new routines and
ideas.
8. Sensory strategies – it is important to recognise that children may be
more responsive to certain stimuli for example sounds, smells, visual
stimuli and touch or may respond in a different way to certain other
stimuli. If the child has sensory difficulties it is important to get a
detailed assessment from the occupational therapist regarding
hyper/hypo sensitivity to stimuli. Depending on the child’s sensitivity it
may be important to avoid distractions, loud noises, strong smells etc.
The child may benefit from having a sensory corner where he/she can
go to relax when they feel overwhelmed by the noise in the classroom
or in the environment. Some children are very sensitive to light touch
but prefer deep pressures perhaps a soft cuddly toy may be offered to
them if they are stressed and anxious. Some therapists may advise a
squeeze toy as well to be used during stressful times. Children may
also benefit from movement breaks, especially if they seek movement
and they may prefer to run around or spin around for a brief period of
time.
9. General – children should be encouraged to undertake physical
exercise and allow time for the same. It is preferable not to tease,
even in a good natured way, as it is likely to be understood literally and
may be taken as a criticism. It is very important to give clear rules for
social interaction as this is a very complex area. Social skills and
interaction may have to be taught in a step wise fashion. Most
importantly, successes have to be celebrated by the family and the
carers.
Management strategies in an educational setting:
1. Visual support – photographs, pictures, symbols and written word can
be used to support the child. They can be used to support the spoken
word so the child has a visual image of what is being said to them.
2. Circle of friends or buddy system – circle of friends is a structured
approach to include and support a child with special needs. The
purpose is to create a group of friends who develop understanding of
the child and help include the child in activities in and outside of school.
3. Social skills training – this involves teaching social skills and rules
specifically to the child. This may include turn taking, greeting people,
sharing.
4. Social stories – these are short stories which give children information
about social situations and how to deal with them. It may help in
explaining feelings of other people and view points and what the child
is expected to do or say. In this way it is hoped that the child with ASD
will know how to act in certain situations.
Other specific approaches may include:
1. Applied behavioural analysis including Lovaas technique - this involves
taking a skill and breaking it down into small steps. Each step is seen
as a goal. This is an intensive technique and does not use much
spoken language. This was started as a home based programme by
Dr Lovaas in the 1960s.
2. Auditory integration training – the aim of this is to alter the child’s
response to certain sounds and to enhance attention skills.
Improvement in hyperactivity, certain obsessions and interaction have
been noticed. Sounds from certain music are made softer and louder
and in a random order.
3. Daily life therapy or Higashi – this approach was developed at Higashi
School in Tokyo and used at a school in Boston, USA. It helps in
reducing stress and building stamina through frequent exercise,
stabilising of emotions and emphasis on music, art and movement.
4. Early bird programme – this was devised by the National Autistic
Society; it is an intensive parent programme. It combines group
training sessions with individual home visits and video feedback which
is used to help parents to combine theory with practice. Groups of 6 –
8 families take part in the programme which looks at the child’s
difficulties and gives structured interactions and strategies to overcome
some difficult behaviour. For more information contact
www.nas.org.uk/earlybird
5. The Hanen approach – this is a group training programme for parents
of young children developed by the Hanen Centre in Canada. This is
delivered only by Speech and Language Therapists. It helps parents to
encourage interaction with their children and learning language.
6. PECS (Picture Exchange Communication System) – this is used for
children who have difficulty using spoken language. It aims to teach
the child to initiate communication. The system uses printed symbols
on cards which the child learns to hand to an adult to get something
he/she wants. For more information contact www.PECS.com
7. The SPELL approach – this has been developed by the National
Autistic Society. This emphasises that interventions have to be
individual and it has to be tailored to the needs of the child. S –
Structure, P – positive interaction, E – empathy, L – low arousal, L –
links with the community. All these things are vital for the child with
ASD to overcome difficulties.
8. TEACCH – Treatment and Education of Autistic and related
Communication Handicapped Children – this programme has a
structured approach and training for independence. Visual aids are
used because of the visual learning style of children with ASD. Key
elements are physical structure where clear boundaries are set so the
child knows where to work, play etc. Visual timetables are used for
children to understand what is going to happen “now and next”.
For more information contact www.teacch.com
There are also various apps available for children with ASD which can be
downloaded on iphone/iPad. These are called social stories app, learning
about emotions etc.
The Paediatrician’s role is largely supportive, unless there are associated comorbidities such as epilepsy, constipation, dyspraxia, sleep problems, ADHD.
In these cases the child will be monitored and managed appropriately
Dr. Shobha Sivaramakrishnan, MD, DCH, MRCPI, FRCPCH, PG cert.(med
ed)
Consultant Paediatrician,UK
2015-03-07