- Email: [email protected]
Autism spectrum disorder: how to help children and families
ARTICLE IN PRESS Current Paediatrics (2004) 14, 208–213
www.elsevierhealth.com/journals/cuoe
Autism spectrum disorder: how to help children and families Rachel Brooksa,*, Martine Marshallsayb, W.I. Fraserb a
Department of Child Health, University of Wales College of Medicine, Cardiff CF14 4XN, UK Learning Disability Directorate, Bro Morgannwg Trust, Treseder Way, Caerau, Cardiff CF5 5WF, UK
b
KEYWORDS Autism spectrum disorder
Summary Children with autism spectrum disorder (ASD) have a social communication disorder with rigid or repetitive behaviours and poor imagination. They vary in intellectual ability, but they all have learning difficulties because of their ASD. We should be working toward the standards for diagnosis and support set in the National Autism Plan for Children (NAPC). All health professionals need a level of understanding of ASD in order to identify difficulties that may be due to ASD and refer appropriately. There is also a need to tailor care to children with ASD who may find interfaces with healthcare services for any reason extremely stressful. Understanding the child or young person with ASD depends on a basic knowledge of the spectrum and taking time to ask questions about the individual child. This article sets out to give some guidance to health professionals about ASD and what may be useful to ask and why. & 2004 Elsevier Ltd. All rights reserved.
Practice points *
*
*
*
The umbrella term autism spectrum disorder (ASD) covers children with widely varied difficulties and needs, despite having the triad of core impairments in common Children with ASD need access to specialist services and advice The National Autism Plan for Children (NAPC)1 sets standards for assessment and services Parents can be hugely stretched providing care for these complex children and need multi-agency support
*Corresponding author. Children’s Service, St. David’s Hospital, Cowbridge Road East, Canton CF11 9XB, UK. Tel.: þ 44-2920744-562; fax: þ 44-2920-744-893. E-mail address: [email protected] (R. Brooks).
*
Enquiring about and accommodating a child’s ASD will promote optimum health care
Introduction Each child with autism spectrum disorder (ASD) is first and foremost a child, with a need to be clothed, fed, kept safe and well, play, learn, and gain some form of independence. Any or all of these basic needs may present a specific challenge for the family of a child with ASD. To help families with these challenges all professionals who come into contact with them need to have an understanding of ASD and the ability to tailor care to the child as an individual.
0957-5839/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.cupe.2004.02.002
ARTICLE IN PRESS Autism spectrum disorder
This article sets out to: (1) discuss the wide variation in the autistic spectrum within a framework of the components of care and support we should be providing for all children with special needs, and (2) identify key issues and events which may require special consideration. It does not set out to describe in detail how to diagnose autism and the recommended time-scales for this process; this information is available elsewhere and is covered in the National Autism Plan for Children (NAPC).1 Rather it aims to describe autism in a way that allows all paediatricians to consider the diagnosis when appropriate and to give consideration to the diagnosis when they meet children with ASD and their families.
209
home or in a residential setting throughout their lives. Common associated difficulties include: * * * *
Co-morbidity includes: * * * *
* *
What is ASD?
Abnormal sensory responses Hyper- or hypo-activity Abnormal eating behaviours Sleep problems
*
Learning difficulties Epilepsy Vision and hearing impairments Associated medical disorder, e.g. fragile X, tuberose sclerosis Depression Attention-deficit hyperactivity disorder (ADHD) Tourette syndrome
The term autism spectrum disorder covers: * * * *
Autistic disorder Asperger syndrome Disintegrative disorder Other autistic-like conditions (atypical autism or pervasive developmental disorder not otherwise specified PDDNOS)
These disorders all include the following ‘triad of impairments’: *
*
*
Severe difficulties in relating with others socially in a reciprocal manner Severe difficulties in communicating reciprocally (expressive and comprehension difficulties and non-verbal communication) Rigid and restricted behaviour and imagination (routines, stereotypes)2
The child or young person with ASD is an individual whose presentation and level of difficulties depends on the severity of the impairments in each of the three above areas and any associated difficulties, co-morbid conditions and level of intellectual ability. Within the spectrum are children with a wide range of intellectual ability. Learning disability is more common in children with ASD, and the proportion of children with ASD increases as the level of learning disability increases.3 However, all children with ASD have learning difficulties, however intellectually able they may be. The diagnosis encompasses able but socially gauche individuals who will find their niche in the world and manage independently and those with severe learning difficulties and/or challenging behaviour who will require intensive support at
From early concerns to diagnosis There is no screening test recommended for ASD. We must, however, listen to parents and take their concerns seriously, as they often suspect a problem early on.4 Children still present at a wide range of ages. Young children whose language is not developing as normal should have this diagnosis actively considered. For children who also have moderate to severe learning difficulties the distinction between general delay and ASD may be more difficult, particularly in the very young child. The diagnosis of ASD may be very helpful in managing and understanding the difficulties of such children, and should be reconsidered at a later date if there is still concern. Children with Asperger syndrome may not present until junior-school age when their difference from their peers becomes more acute.
Diagnosis of ASD The diagnosis of ASD is discussed at length in the NAPC,1 which sets out standards for the process, including the composition of the assessment team and the time-scales to achieve assessment. The current arrangements for assessment of children across the UK vary at present, but we should be working towards those standards. There is also a number of assessment tests that can feed into the diagnostic process. The items in brief are: *
a detailed developmental history honing in on the development of social and communication skills and behaviours;
ARTICLE IN PRESS 210
*
*
*
* *
history and examination to identify any associated conditions or co-morbidity; cognitive assessment to be able to interpret behaviours in terms of their developmental appropriateness; observations in more than one setting (ideally including some settings with peers); speech and language assessment; exploration of specific difficulties families are experiencing in order to tailor advice and support.
Diagnosis may be made at a secondary level with a multi-professional team whose members have appropriate training and experience. There should also be access to a tertiary service for difficult diagnoses and for children who require more expert help. The diagnosis may have been gradually emerging over a period of time, but for parents the confirmation of their belief (or fear) that their child has ASD is still a defining moment. Adhering to guidance about good disclosure of diagnosis will help parents accept and cope with this event and the future.5 Parents need sound advice at this stage particularly, and will naturally canvas this from any health professionals they are involved with. However, conflicting and confusing advice is widely available in this field. Health professionals should be certain that they are giving accurate and up-to-date advice, or be honest that the area is not one in which they have expertise and refer the question.
Case 1: Joshua Joshua is 3 years old and has recently started nursery. The teacher has told his parents that he appears to be very much a loner, taking little interest in the other children; that he has poor eye contact with adults and peers; and that they have not heard him speak at all. Joshua’s parents had also been concerned about him but had felt that he was merely shy, partly because his language development was not good (he has been referred to the speech and language therapist at the suggestion of the health visitor). Joshua is an only child and had little contact with other small children before starting nursery. At an appointment to discuss the results of assessments Joshua’s parents were informed that he has a diagnosis of ASD. The implications of the diagnosis were discussed with the family and they were given a leaflet including contact details for the National Autistic Society (NAS) and recommended books for parents with a newly
R. Brooks et al.
diagnosed child. A team member arranged to see them at home, and they were given a contact telephone number should they wish to ask any additional questions prior to the planned visit. The family was also given a leaflet describing the EarlyBird programme.6 A letter was sent to the parents summarising the discussion at the clinic appointment. With their permission Joshua was referred to the pupil support service for a statement of special education needs to be completed.
Case 2: Emma Emma is 8 years old. She has been assessed by pupil support services and has a diagnosis of dyslexia. Her teachers are concerned that she is falling behind her peers academically, and they have noticed that she appears at times to ‘blank off’ and be out of contact with what is going on in the classroom. Emma spends playtime on her own, walking around the lines of the netball pitch. Emma’s teachers have noticed that she is rather old-fashioned in the way she speaks, and unlike her peers she is not interested in pop music and fashion but talks at great length and in detail about historical facts. Emma is noted to be both pedantic and clipped when speaking. Emma has undergone the assessment process and, at a follow-up appointment, a diagnosis of Asperger syndrome has been confirmed. Information and support were provided in a similar way to that described for Joshua, and the new information was sent to pupil support services. Emma’s electroencephalogram (EEG) indicated that she was having absences; medication has commenced with good effect and a noticeable improvement in her concentration in school. Emma has recently told her parents that she knows she is different from other children in her class, and they are keen to provide age-appropriate information for her regarding her diagnosis. The team has suggested contact with the NAS who also have information for siblings, as Emma has an older brother who has been asking questions. Emma’s parents are keen for her to join the local Brownie Guide group, but are worried that she may not cope. The team advises that they contact the group leader and provide her with information about Asperger syndrome prior to Emma attending. The team also suggests that the group leader could set up a ‘buddy’ system for Emma, linking her with another child who is an established attendee and could help her settle in to the group.
ARTICLE IN PRESS Autism spectrum disorder
Information and support
211
costly in time and money to families, and they require expert advice prior to implementation.
Written information There is a plethora of written information on ASD in book and leaflet form and online. It should be remembered that access to this information depends on parents’ finances and literacy. Parents appreciate advice about how to select information relevant to their own child.
Key worker For children with ASD the key worker should have experience and training in ASD and access to tertiary-level advice, as well as being a member of the multi-disciplinary team providing routine follow-up.
Membership of voluntary organisations These include the NAS and Autism Cymru. These organisations may have local groups for support and education; they run (and advertise) training days aimed at parents and professionals on aspects of ASD.
EarlyBird EarlyBird,6 which is available in some areas, will answer the need of parents of children under five for advice and information. It is generally run by child psychologists and/or speech therapists who have been on a specific training course. Two places are offered to each family for weekly sessions on a 13-week course that includes home visits, group training, and work around videos of their own child’s behaviour. Outcomes are being fed back to ongoing evaluations of this course for the NAS and are encouraging. Parents value this opportunity.
Interventions Behavioural management and intervention The behaviour of a child with ASD should be interpreted in the light of their core impairments, associated difficulties and developmental level. Understanding ASD and accessing information is helpful for parents. Early behavioural intervention seems to confer benefit. TEACCH (Treatment and Education of Autistic and related Communication handicapped Children)7 is almost universally used in schools, but more stringent approaches are
Communication All children with ASD need assessment by an experienced speech and language therapist. They require speech, language, and social communication skills training built into life at home and at school where possible, with programmes devised and monitored (but not necessarily delivered) by the therapist. The picture exchange communication system (PECS) is a valuable method of introducing the concept of communication to younger children who may go on to develop speech, and of providing a means of communication to children and young people who cannot develop spoken language. To be successful, this programme needs to be introduced stepwise under the management of a trained therapist who advises teachers and parents. Children with ASD do not apply skills learned in one setting to another, and PECS needs to be taught at home and at school to be successful in both settings. Children with language may speak little or a great deal, but have no skills in conversation or interpreting situations using verbal, non-verbal or situational cues. Their understanding of language will be literal and concrete: saying ‘give me your hand’ may provoke a look of horrorFclearly your hand is attached to your arm and therefore cannot be given without bloodshed! The speech and language therapist can offer programmes such as the use of Social Stories to help children and young people make sense of situations and interactions with others.8
Dietician A restricted diet is common, although not universal, in children in the autistic spectrum. Chicken nuggets, strawberry yoghurt and Walkers (only Walkers!) prawn cocktail crisps may be all a child will eat at home, although he or she may eat other things in other settings (e.g. Granny’s cheese sandwiches). A dietician can assess the overall nutritional value of the diet and reassure a desperate mother or advise supplements. Working to increase the dietary repertoire is difficult and slow. There are many parents who wish to try eliminating gluten, wheat, dairy products and so on from the diet in order to try to improve their child’s symptoms, especially if there are bowel
ARTICLE IN PRESS 212
problems. There is no evidence that these ingredients have any impact on the core impairments of children in the autistic spectrum.1 Referral to a dietician can support parents and ensure that any diet is nutritionally balanced.
Transitions Times of transition will be especially difficult for a child with ASD and his or her family. Professional advice and support, both practical and psychological, should be provided. Each transition may bring its own specific difficulties and challenges, although common themes will be adjusting to changes in routine, venue, staff and other children, all of which will cause anxiety for the child and challenges for their family in supporting them through these changes. A child’s first day at school is an emotional milestone for parents. The transition from nursery provision to full-time educational placement, when a more structured routine and environment is introduced, will cause particular problems for children with short attention spans and/or who like to work to their own agenda. Provision should be in place on day one. If a child attends mainstream school, the transition from primary to high school is another major life event. The move from a familiar environment with one teacher to a much larger school with changes of rooms, teachers and subjects throughout the day is likely to cause anxiety for a child with ASD. The noise level in corridors and the organisational skills required to ‘change classes’ may be daunting for the child. Practical help from nonteaching adult support may be necessary, or a buddy system may be appropriate. Perhaps the most difficult transition for children with ASD and their parents is that from the educational system to adult life, and planning for this should start at 14 years of age. Interagency collaboration at this time is essential to ensure that all possible options after leaving school are considered. All professionals involved should attend annual review meetings following the child’s 14th birthday. At this time the intellectual and social abilities of the young person with ASD will be major influences on the options available when entering adult life. It is essential that emotional support is available at this time, in addition to practical guidance. Leaving school is a poignant landmark at which the reality of ASD and its impact on life planning for the young person and his or her family is very sharply focussed.
R. Brooks et al.
Residential care There are some children, with and without intellectual disability and ASD, who cannot be cared for in the family home as they get older. Making the decision that residential education and care is the correct solution for their child and the rest of their family is an enormous step for parents. Advice from specialist professionals will be part of this process.
Follow-on and other health care This group of children may have particular difficulties that challenge the attempts of parents and health professionals to manage autism-specific, comorbid or incidental health conditions. *
*
*
*
*
*
Inability to communicate feeling unwell because of language delay or lack of help-seeking strategies. High pain thresholds or no apparent reaction to pain. High anxiety levels in unfamiliar surroundings (e.g. waiting rooms). Sensory issues leading to extreme distress at touch or application of dressings, etc. Extremely limited repertoire of foods, and hence inability to tolerate medication (or ward food!). Extremely rigid routines, making alterations in medication problematic.
It is important to remember the ‘triad of impairments’ when arranging appointments, investigations, and interventions for children in the autistic spectrum. It may be helpful to imagine how difficult it is for anyone visiting a different country and feeling vulnerable because the language is ‘foreign’. For children in the autistic spectrum visiting an unfamiliar place and meeting unfamiliar people can be frightening, as they have difficulty understanding not only spoken communication but also gestures, facial expressions and the concept of why they are attending an appointment. Consideration of the following issues may assist children with ASD and their families in these situations.
Prior to appointment Providing information to parents about what will happen at an appointment and who will be present will allow them to prepare their child as well as possible. Appointments should be planned so as to minimise the time the child must spend in the waiting area, particularly if the child is very active. Also, extra time should be allowed for
ARTICLE IN PRESS Autism spectrum disorder
appointments: e.g. a double appointment may be booked, especially if an examination or investigations are planned.
213
information was discussed, as parents may have difficulty in recalling the issues if their child required comfort and support during the appointment.
At appointment *
*
*
*
*
*
At the beginning of an appointment ask the parents about their child’s level of understanding and method of communicating their needs. Ask how the child prefers to be touchedFe.g. lightly or firmlyFbefore any physical examination. Ask if the child has any specific fears or sensitivities: e.g. loud noises, lights, others invading their personal space, etc. If venepuncture or other intervention is necessary ensure that this is carried out in a different room to the one used for discussion and examination, to avoid an association that may cause difficulties at future appointments. When speaking to the child use short sentences with key words, and be aware that the child may have a very literal understanding of language. Be prepared to remove any dangers in the consulting room, as the child may climb and explore without inhibitions or any sense of danger; constantly minding the child will make addressing the issues in the consultation very difficult.
If at an appointment it becomes clear that an anaesthetic will be necessary for a planned investigation or procedure, share that information with the paediatrician dealing with the child’s general care. This might be a rare opportunity to examine this child or perform another investigation under optimum conditions.
Following an appointment Consider providing a written summary of what was said during the appointment, especially if new
Admission to hospital All the above is relevant if a child with ASD has to be admitted to hospital. Sometimes a large change in routine such as this provokes less anxiety than small, seemingly trivial changes. Parents can provide an insight into their child’s difficulties and how the environment can be arranged to help them. The parents can also be asked to nominate a member of the team providing care for that child who would be able to give professional advice about any issue regarding the child’s ASD and its impact on health and health care.
References 1. National Autism Plan for Children. National Autistic Society for NAISA (National Initiative for Autism: Screening and Assessment) in collaboration with the Royal College of Psychiatrists, Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism, 2003. 2. Gillberg C, Coleman M. The biology of the autistic syndromes, 3rd ed. Cambridge: Mac Keith Press, Cambridge University Press; 2000. 3. Melville CA, Cameron J. Autism. In Fraser W, Kerr M. Seminars in the psychiatry of learning disabilities, Gaskell Press, London 2nd ed. 2003. 4. Hall DH, Elliman D. Health for all children. Oxford: Oxford University Press; 2003. 5. Lloyd Evans A, Knight-Jones E, Nicholson J. Standards for child development services. British Association of Community Child Health Child Development and Disability Group, BAACH Publication, London 1999. 6. http://w02-0211.web.dircon.net/nas/earlybird 7. www.teacch.com 8. www.nas.org.uk
www.elsevierhealth.com/journals/cuoe
Autism spectrum disorder: how to help children and families Rachel Brooksa,*, Martine Marshallsayb, W.I. Fraserb a
Department of Child Health, University of Wales College of Medicine, Cardiff CF14 4XN, UK Learning Disability Directorate, Bro Morgannwg Trust, Treseder Way, Caerau, Cardiff CF5 5WF, UK
b
KEYWORDS Autism spectrum disorder
Summary Children with autism spectrum disorder (ASD) have a social communication disorder with rigid or repetitive behaviours and poor imagination. They vary in intellectual ability, but they all have learning difficulties because of their ASD. We should be working toward the standards for diagnosis and support set in the National Autism Plan for Children (NAPC). All health professionals need a level of understanding of ASD in order to identify difficulties that may be due to ASD and refer appropriately. There is also a need to tailor care to children with ASD who may find interfaces with healthcare services for any reason extremely stressful. Understanding the child or young person with ASD depends on a basic knowledge of the spectrum and taking time to ask questions about the individual child. This article sets out to give some guidance to health professionals about ASD and what may be useful to ask and why. & 2004 Elsevier Ltd. All rights reserved.
Practice points *
*
*
*
The umbrella term autism spectrum disorder (ASD) covers children with widely varied difficulties and needs, despite having the triad of core impairments in common Children with ASD need access to specialist services and advice The National Autism Plan for Children (NAPC)1 sets standards for assessment and services Parents can be hugely stretched providing care for these complex children and need multi-agency support
*Corresponding author. Children’s Service, St. David’s Hospital, Cowbridge Road East, Canton CF11 9XB, UK. Tel.: þ 44-2920744-562; fax: þ 44-2920-744-893. E-mail address: [email protected] (R. Brooks).
*
Enquiring about and accommodating a child’s ASD will promote optimum health care
Introduction Each child with autism spectrum disorder (ASD) is first and foremost a child, with a need to be clothed, fed, kept safe and well, play, learn, and gain some form of independence. Any or all of these basic needs may present a specific challenge for the family of a child with ASD. To help families with these challenges all professionals who come into contact with them need to have an understanding of ASD and the ability to tailor care to the child as an individual.
0957-5839/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.cupe.2004.02.002
ARTICLE IN PRESS Autism spectrum disorder
This article sets out to: (1) discuss the wide variation in the autistic spectrum within a framework of the components of care and support we should be providing for all children with special needs, and (2) identify key issues and events which may require special consideration. It does not set out to describe in detail how to diagnose autism and the recommended time-scales for this process; this information is available elsewhere and is covered in the National Autism Plan for Children (NAPC).1 Rather it aims to describe autism in a way that allows all paediatricians to consider the diagnosis when appropriate and to give consideration to the diagnosis when they meet children with ASD and their families.
209
home or in a residential setting throughout their lives. Common associated difficulties include: * * * *
Co-morbidity includes: * * * *
* *
What is ASD?
Abnormal sensory responses Hyper- or hypo-activity Abnormal eating behaviours Sleep problems
*
Learning difficulties Epilepsy Vision and hearing impairments Associated medical disorder, e.g. fragile X, tuberose sclerosis Depression Attention-deficit hyperactivity disorder (ADHD) Tourette syndrome
The term autism spectrum disorder covers: * * * *
Autistic disorder Asperger syndrome Disintegrative disorder Other autistic-like conditions (atypical autism or pervasive developmental disorder not otherwise specified PDDNOS)
These disorders all include the following ‘triad of impairments’: *
*
*
Severe difficulties in relating with others socially in a reciprocal manner Severe difficulties in communicating reciprocally (expressive and comprehension difficulties and non-verbal communication) Rigid and restricted behaviour and imagination (routines, stereotypes)2
The child or young person with ASD is an individual whose presentation and level of difficulties depends on the severity of the impairments in each of the three above areas and any associated difficulties, co-morbid conditions and level of intellectual ability. Within the spectrum are children with a wide range of intellectual ability. Learning disability is more common in children with ASD, and the proportion of children with ASD increases as the level of learning disability increases.3 However, all children with ASD have learning difficulties, however intellectually able they may be. The diagnosis encompasses able but socially gauche individuals who will find their niche in the world and manage independently and those with severe learning difficulties and/or challenging behaviour who will require intensive support at
From early concerns to diagnosis There is no screening test recommended for ASD. We must, however, listen to parents and take their concerns seriously, as they often suspect a problem early on.4 Children still present at a wide range of ages. Young children whose language is not developing as normal should have this diagnosis actively considered. For children who also have moderate to severe learning difficulties the distinction between general delay and ASD may be more difficult, particularly in the very young child. The diagnosis of ASD may be very helpful in managing and understanding the difficulties of such children, and should be reconsidered at a later date if there is still concern. Children with Asperger syndrome may not present until junior-school age when their difference from their peers becomes more acute.
Diagnosis of ASD The diagnosis of ASD is discussed at length in the NAPC,1 which sets out standards for the process, including the composition of the assessment team and the time-scales to achieve assessment. The current arrangements for assessment of children across the UK vary at present, but we should be working towards those standards. There is also a number of assessment tests that can feed into the diagnostic process. The items in brief are: *
a detailed developmental history honing in on the development of social and communication skills and behaviours;
ARTICLE IN PRESS 210
*
*
*
* *
history and examination to identify any associated conditions or co-morbidity; cognitive assessment to be able to interpret behaviours in terms of their developmental appropriateness; observations in more than one setting (ideally including some settings with peers); speech and language assessment; exploration of specific difficulties families are experiencing in order to tailor advice and support.
Diagnosis may be made at a secondary level with a multi-professional team whose members have appropriate training and experience. There should also be access to a tertiary service for difficult diagnoses and for children who require more expert help. The diagnosis may have been gradually emerging over a period of time, but for parents the confirmation of their belief (or fear) that their child has ASD is still a defining moment. Adhering to guidance about good disclosure of diagnosis will help parents accept and cope with this event and the future.5 Parents need sound advice at this stage particularly, and will naturally canvas this from any health professionals they are involved with. However, conflicting and confusing advice is widely available in this field. Health professionals should be certain that they are giving accurate and up-to-date advice, or be honest that the area is not one in which they have expertise and refer the question.
Case 1: Joshua Joshua is 3 years old and has recently started nursery. The teacher has told his parents that he appears to be very much a loner, taking little interest in the other children; that he has poor eye contact with adults and peers; and that they have not heard him speak at all. Joshua’s parents had also been concerned about him but had felt that he was merely shy, partly because his language development was not good (he has been referred to the speech and language therapist at the suggestion of the health visitor). Joshua is an only child and had little contact with other small children before starting nursery. At an appointment to discuss the results of assessments Joshua’s parents were informed that he has a diagnosis of ASD. The implications of the diagnosis were discussed with the family and they were given a leaflet including contact details for the National Autistic Society (NAS) and recommended books for parents with a newly
R. Brooks et al.
diagnosed child. A team member arranged to see them at home, and they were given a contact telephone number should they wish to ask any additional questions prior to the planned visit. The family was also given a leaflet describing the EarlyBird programme.6 A letter was sent to the parents summarising the discussion at the clinic appointment. With their permission Joshua was referred to the pupil support service for a statement of special education needs to be completed.
Case 2: Emma Emma is 8 years old. She has been assessed by pupil support services and has a diagnosis of dyslexia. Her teachers are concerned that she is falling behind her peers academically, and they have noticed that she appears at times to ‘blank off’ and be out of contact with what is going on in the classroom. Emma spends playtime on her own, walking around the lines of the netball pitch. Emma’s teachers have noticed that she is rather old-fashioned in the way she speaks, and unlike her peers she is not interested in pop music and fashion but talks at great length and in detail about historical facts. Emma is noted to be both pedantic and clipped when speaking. Emma has undergone the assessment process and, at a follow-up appointment, a diagnosis of Asperger syndrome has been confirmed. Information and support were provided in a similar way to that described for Joshua, and the new information was sent to pupil support services. Emma’s electroencephalogram (EEG) indicated that she was having absences; medication has commenced with good effect and a noticeable improvement in her concentration in school. Emma has recently told her parents that she knows she is different from other children in her class, and they are keen to provide age-appropriate information for her regarding her diagnosis. The team has suggested contact with the NAS who also have information for siblings, as Emma has an older brother who has been asking questions. Emma’s parents are keen for her to join the local Brownie Guide group, but are worried that she may not cope. The team advises that they contact the group leader and provide her with information about Asperger syndrome prior to Emma attending. The team also suggests that the group leader could set up a ‘buddy’ system for Emma, linking her with another child who is an established attendee and could help her settle in to the group.
ARTICLE IN PRESS Autism spectrum disorder
Information and support
211
costly in time and money to families, and they require expert advice prior to implementation.
Written information There is a plethora of written information on ASD in book and leaflet form and online. It should be remembered that access to this information depends on parents’ finances and literacy. Parents appreciate advice about how to select information relevant to their own child.
Key worker For children with ASD the key worker should have experience and training in ASD and access to tertiary-level advice, as well as being a member of the multi-disciplinary team providing routine follow-up.
Membership of voluntary organisations These include the NAS and Autism Cymru. These organisations may have local groups for support and education; they run (and advertise) training days aimed at parents and professionals on aspects of ASD.
EarlyBird EarlyBird,6 which is available in some areas, will answer the need of parents of children under five for advice and information. It is generally run by child psychologists and/or speech therapists who have been on a specific training course. Two places are offered to each family for weekly sessions on a 13-week course that includes home visits, group training, and work around videos of their own child’s behaviour. Outcomes are being fed back to ongoing evaluations of this course for the NAS and are encouraging. Parents value this opportunity.
Interventions Behavioural management and intervention The behaviour of a child with ASD should be interpreted in the light of their core impairments, associated difficulties and developmental level. Understanding ASD and accessing information is helpful for parents. Early behavioural intervention seems to confer benefit. TEACCH (Treatment and Education of Autistic and related Communication handicapped Children)7 is almost universally used in schools, but more stringent approaches are
Communication All children with ASD need assessment by an experienced speech and language therapist. They require speech, language, and social communication skills training built into life at home and at school where possible, with programmes devised and monitored (but not necessarily delivered) by the therapist. The picture exchange communication system (PECS) is a valuable method of introducing the concept of communication to younger children who may go on to develop speech, and of providing a means of communication to children and young people who cannot develop spoken language. To be successful, this programme needs to be introduced stepwise under the management of a trained therapist who advises teachers and parents. Children with ASD do not apply skills learned in one setting to another, and PECS needs to be taught at home and at school to be successful in both settings. Children with language may speak little or a great deal, but have no skills in conversation or interpreting situations using verbal, non-verbal or situational cues. Their understanding of language will be literal and concrete: saying ‘give me your hand’ may provoke a look of horrorFclearly your hand is attached to your arm and therefore cannot be given without bloodshed! The speech and language therapist can offer programmes such as the use of Social Stories to help children and young people make sense of situations and interactions with others.8
Dietician A restricted diet is common, although not universal, in children in the autistic spectrum. Chicken nuggets, strawberry yoghurt and Walkers (only Walkers!) prawn cocktail crisps may be all a child will eat at home, although he or she may eat other things in other settings (e.g. Granny’s cheese sandwiches). A dietician can assess the overall nutritional value of the diet and reassure a desperate mother or advise supplements. Working to increase the dietary repertoire is difficult and slow. There are many parents who wish to try eliminating gluten, wheat, dairy products and so on from the diet in order to try to improve their child’s symptoms, especially if there are bowel
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problems. There is no evidence that these ingredients have any impact on the core impairments of children in the autistic spectrum.1 Referral to a dietician can support parents and ensure that any diet is nutritionally balanced.
Transitions Times of transition will be especially difficult for a child with ASD and his or her family. Professional advice and support, both practical and psychological, should be provided. Each transition may bring its own specific difficulties and challenges, although common themes will be adjusting to changes in routine, venue, staff and other children, all of which will cause anxiety for the child and challenges for their family in supporting them through these changes. A child’s first day at school is an emotional milestone for parents. The transition from nursery provision to full-time educational placement, when a more structured routine and environment is introduced, will cause particular problems for children with short attention spans and/or who like to work to their own agenda. Provision should be in place on day one. If a child attends mainstream school, the transition from primary to high school is another major life event. The move from a familiar environment with one teacher to a much larger school with changes of rooms, teachers and subjects throughout the day is likely to cause anxiety for a child with ASD. The noise level in corridors and the organisational skills required to ‘change classes’ may be daunting for the child. Practical help from nonteaching adult support may be necessary, or a buddy system may be appropriate. Perhaps the most difficult transition for children with ASD and their parents is that from the educational system to adult life, and planning for this should start at 14 years of age. Interagency collaboration at this time is essential to ensure that all possible options after leaving school are considered. All professionals involved should attend annual review meetings following the child’s 14th birthday. At this time the intellectual and social abilities of the young person with ASD will be major influences on the options available when entering adult life. It is essential that emotional support is available at this time, in addition to practical guidance. Leaving school is a poignant landmark at which the reality of ASD and its impact on life planning for the young person and his or her family is very sharply focussed.
R. Brooks et al.
Residential care There are some children, with and without intellectual disability and ASD, who cannot be cared for in the family home as they get older. Making the decision that residential education and care is the correct solution for their child and the rest of their family is an enormous step for parents. Advice from specialist professionals will be part of this process.
Follow-on and other health care This group of children may have particular difficulties that challenge the attempts of parents and health professionals to manage autism-specific, comorbid or incidental health conditions. *
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Inability to communicate feeling unwell because of language delay or lack of help-seeking strategies. High pain thresholds or no apparent reaction to pain. High anxiety levels in unfamiliar surroundings (e.g. waiting rooms). Sensory issues leading to extreme distress at touch or application of dressings, etc. Extremely limited repertoire of foods, and hence inability to tolerate medication (or ward food!). Extremely rigid routines, making alterations in medication problematic.
It is important to remember the ‘triad of impairments’ when arranging appointments, investigations, and interventions for children in the autistic spectrum. It may be helpful to imagine how difficult it is for anyone visiting a different country and feeling vulnerable because the language is ‘foreign’. For children in the autistic spectrum visiting an unfamiliar place and meeting unfamiliar people can be frightening, as they have difficulty understanding not only spoken communication but also gestures, facial expressions and the concept of why they are attending an appointment. Consideration of the following issues may assist children with ASD and their families in these situations.
Prior to appointment Providing information to parents about what will happen at an appointment and who will be present will allow them to prepare their child as well as possible. Appointments should be planned so as to minimise the time the child must spend in the waiting area, particularly if the child is very active. Also, extra time should be allowed for
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appointments: e.g. a double appointment may be booked, especially if an examination or investigations are planned.
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information was discussed, as parents may have difficulty in recalling the issues if their child required comfort and support during the appointment.
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At the beginning of an appointment ask the parents about their child’s level of understanding and method of communicating their needs. Ask how the child prefers to be touchedFe.g. lightly or firmlyFbefore any physical examination. Ask if the child has any specific fears or sensitivities: e.g. loud noises, lights, others invading their personal space, etc. If venepuncture or other intervention is necessary ensure that this is carried out in a different room to the one used for discussion and examination, to avoid an association that may cause difficulties at future appointments. When speaking to the child use short sentences with key words, and be aware that the child may have a very literal understanding of language. Be prepared to remove any dangers in the consulting room, as the child may climb and explore without inhibitions or any sense of danger; constantly minding the child will make addressing the issues in the consultation very difficult.
If at an appointment it becomes clear that an anaesthetic will be necessary for a planned investigation or procedure, share that information with the paediatrician dealing with the child’s general care. This might be a rare opportunity to examine this child or perform another investigation under optimum conditions.
Following an appointment Consider providing a written summary of what was said during the appointment, especially if new
Admission to hospital All the above is relevant if a child with ASD has to be admitted to hospital. Sometimes a large change in routine such as this provokes less anxiety than small, seemingly trivial changes. Parents can provide an insight into their child’s difficulties and how the environment can be arranged to help them. The parents can also be asked to nominate a member of the team providing care for that child who would be able to give professional advice about any issue regarding the child’s ASD and its impact on health and health care.
References 1. National Autism Plan for Children. National Autistic Society for NAISA (National Initiative for Autism: Screening and Assessment) in collaboration with the Royal College of Psychiatrists, Royal College of Paediatrics and Child Health, and the All Party Parliamentary Group on Autism, 2003. 2. Gillberg C, Coleman M. The biology of the autistic syndromes, 3rd ed. Cambridge: Mac Keith Press, Cambridge University Press; 2000. 3. Melville CA, Cameron J. Autism. In Fraser W, Kerr M. Seminars in the psychiatry of learning disabilities, Gaskell Press, London 2nd ed. 2003. 4. Hall DH, Elliman D. Health for all children. Oxford: Oxford University Press; 2003. 5. Lloyd Evans A, Knight-Jones E, Nicholson J. Standards for child development services. British Association of Community Child Health Child Development and Disability Group, BAACH Publication, London 1999. 6. http://w02-0211.web.dircon.net/nas/earlybird 7. www.teacch.com 8. www.nas.org.uk