Pediatric Therapy Corner: Autism in Children and Adults with Down Syndrome
Reprinted with the express permission of the Down Syndrome Centre as originally published on their website.
By: Colin Reilly
For many, the perceived typical personality profile of Down syndrome (i.e., that of an individual who is affectionate and outgoing) seems to go against the typical personality profile associated with Autism (also known as Autism Spectrum Disorder). While people with Down syndrome have been traditionally described as friendly, affectionate, and extroverted, not all individuals with Down syndrome possess these personality characteristics. Some have significant difficulties in the triad of impairments associated with Autism. All children and adults with Autism have difficulties in three areas known as the triad of impairments. These areas are social interaction, social communication, and social imagination. There is no one behaviour or sign that indicates a child has Autism but all have difficulties in each of these three areas.
What type of difficulties does a child or adult with Autism display?
All children and adults with Autism have difficulties in three areas known as the triad ofimpairments. These three areas are outlined below with descriptions of common difficulties in each area:
1. Social Communication
Children and adults with Autism have difficulties with both verbal and non-verbal communication. All will have delayed speech and some will not develop purposeful speech. For those who do develop speech they may have difficulty understanding the ‘give and take’ nature of conversations, perhaps repeating what the other person has said (called echolalia), or talking excessively about one topic. They can find it difficult to use or understand facial expressions, tone of voice and understand jokes.
2. Social Interaction
Children with Autism have great difficulty understanding people’s emotions and feelings and expressing their own feelings. They may not seek comfort from other children or adults and prefer to spend time alone rather than seeking the company of peers. Some may appear interested in other children or adults but approach them in inappropriate or odd ways, not understanding concepts such as personal space, appropriate eye contact, or how to interact in social situations. These difficulties with social interaction can impact on the child and adults ability to form friendships and to mix with other people.
3. Social Imagination
Children and adults with Autism may have difficulty understanding people’s thoughts, feelings, and actions. They may have difficulty understanding what will happen next, understanding the concept of danger, coping with change, or coping in new and unfamiliar situations. Children with Autism have difficulty engaging in play activities, often not playing with toys in an inappropriate manner or showing no interest in toys. These children may have a very limited range of interests, often watching television programmes or films repetitively and they may also engage in repetitive stereotyped body movements such as hand flapping, finger flicking, spinning, or rocking. Routines and sameness provide them with security as they find it difficult to cope with changes to their routines or changes in their environment. They may create ‘rituals’ where they insist things are done in the same way each time and develop obsessions or a narrow range of interests and attachments to objects, and be very upset when they are not allowed to carry around favourite objects.
Other common characteristics of children and adults with Autism
As well as the three main areas of difficulty, children and adults with Autism may have other difficulties. Many children and adults with Autism may experience some form of sensory sensitivity. Their senses may be either intensified (Hyper-sensitive) or under sensitive (Hypo-sensitive). For example, a child may find certain sounds very loud or distracting or may stand too close to others or may have a distorted sense of smell. Children and adults with Autism may have difficulties with fine and/or gross motor coordination appearing clumsy when engaging in physical activities. Children and adults with Autism are usually better visual than verbal learners and may respond well to pictures, photographs but have greater difficulty understanding speech. They may be quite able in one or two areas (e.g., memory skills) but have greater difficulty in other areas. Some children with Autism display many symptoms of Attention Deficit Hyperactivity Disorder (ADHD) excessively running and climbing, and finding it difficult to focus on learning tasks.
Why diagnose Autism in children and adults with Down syndrome?
A failure to recognise or diagnose Autism in children and adults with Down syndrome may result in inappropriate educational, vocational, adult, or residential placement and unnecessary emotional hardship and lack of understanding of their needs for their parents and people who support them. Failure to diagnose may prevent parents from accessing supports and interventions available to families with children who have Autism. Appropriate provision for children with both Down syndrome and Autism is likely to differ somewhat from that of individuals with Down syndrome who do not have Autism, and this may have implications for educational and adult services.
Earlier identification of Autism in people with Down syndrome may ensure provision of appropriate advice and education. Having access to services for those with Autism and to professionals experienced in the management of Autism, is likely to be of significant benefit to those affected by both Down syndrome and Autism.
How is Autism diagnosed in children with Down syndrome?
Autism is diagnosed in Down syndrome in the same manner as it is diagnosed in other children and adults who do not have Down syndrome. Autism is diagnosed on the basis of behaviour. Blood tests and brain scans cannot reveal if an individual has Autism. Diagnosis should involve observations of the child or adult, parental/caregiver interview, assessment of an individual’s intellectual ability, and medical screening. Autism should be diagnosed by a team of professionals from two or more disciplines (e.g., psychiatrist, psychologist, speech and language therapist, pediatrician, occupational therapist, social worker). In order for a child or adult to receive a diagnosis, a professional or team of professionals must decide that a child meets standard criteria set out in two international classification systems, both of which are based on the triad of impairments. These are:
· DSM-IV (Diagnostic and Statistical Manual –Fourth Edition)
· ICD-10 (International Classification of Diseases –Tenth Edition)
How common is Autism in Down syndrome?
A number of studies that have attempted to ascertain the prevalence of Autism in the Down syndrome population and estimates from the larger studies have varied from a high of 15% to a low of 7%. Until a study involving a large number of individuals is carried out using appropriate instruments and diagnostic methods the exact prevalence rate will be difficult to ascertain. However, a rate of 1 in 10 or 10% seems a reasonable estimate of the number of individuals of Down syndrome who also have Autism.
Interventions for children and adults with Autism and Down syndrome
There are very little published research studies on what approaches are most suitable for children and adults who have both Autism and Down syndrome. However, anecdotal evidence and clinical experience suggest that the children with both Down syndrome and Autism are likely to benefit from educational and therapeutic approaches that are recommended for children with Autism alone. These interventions include:
- Behavioural Approaches: (e.g., Applied Behaviour Analysis (ABA)). The aim is to teach specific behaviours that will improve the quality of life of children with Autism by reinforcing (rewarding) desirable behaviour and reducing undesirable behaviour.
- Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH): The aim is to improve skills by providing a structured environment and structured education. The environment is modified to accommodate the strengths of children with Autism (e.g., visual processing, need for structure) and to limit the impact of deficits related to Autism.
- Picture Exchange Communication System (PECS): PECS is an augmentative or alternative communication system that can be used with children with Autism and other communication deficits. PECS is a reward-based system that teaches the child to initiate communication and become a functional communicator. PECS can be used with children and adults who have no speech or limited speech, and it can be used in conjunction with other communication systems. There are six stages in the PECS training, starting with learning to exchange a single symbol to make a request, and moving on to forming sentences, answering questions and making comments. The training uses prompts and rewards in a manner similar to behavioural approaches.
- Interactive approaches: The aim of interactive approaches is to develop the social and communication skills of children with Autism and to help children with Autism to take the initiative to communicate and interact with others. An approach in this mould is FloortimeTM. FloortimeTM is a specific technique to both follow the child’s natural emotional interests (lead) and at the same time challenge the child towards greater and greater mastery of the social, emotional and intellectual capacities. With young children these playful interactions may occur on the “floor”, but go on to include conversations and interactions in other places.
- Sensory Integration Therapy: Children and adults with Autism may display a range of sensory processing difficulties. Our sensory systems tell us about our body position, how we move, what we touch, taste, hear, see and smell. The goal of Sensory Integration Therapy (SIT) is to help the development of the nervous system’s ability to process sensory input in a more normal way. A widely used concept of SIT is the sensory diet. A sensory diet is a programme of sensory exercises designed to meet the needs of each child’s nervous system.
It is important to note that just as each child and adult with Down syndrome is unique, children and adults with have both Down syndrome and Autism also have unique educational and developmental needs, and approaches that work with one child may not work with another child. Many approaches that work for children and adults who have Down syndrome without Autism may also be suitable for children and adults with both conditions. However, if a child or adult has both Down syndrome and Autism it is likely that a knowledge of approaches that work for children and adults with Autism will be particularly helpful.
What do I do if I think my child with Down syndrome is at risk of having Autism?
If you have concerns that your child is at risk for Autism, you should discuss your concerns with some of the professionals who work with your child (e.g., psychologist, psychiatrist, paediatrician, speech and language therapist, occupational therapist) as they may be able to advise you on what course of action to take. The following list of ‘red flags’ may be helpful in deciding if your child is at risk. No one behaviour alone can indicate if your child has Autism but if your child presents with a number of the behaviours below and the behaviours seem to fit the triad of behaviours associated with Autism your child may be at risk and you should seek professional advice.
Red flags for Autism in Individuals with Down syndrome
- Significant challenging behaviour
- Lack of pretend/imaginative play
- Marked motor stereotypes (e.g., rocks, flaps, odd noises)
- Repetitive and non-communicative language in those with speech (e.g., echolalia).
- Marked impairment in social interactions
- Unusual sensory behaviours (e.g., smelling people, objects)
- Mainstream or special school not adequately meeting children’s needs
- Parental concerns that child is different from typical child with Down syndrome
- Poor eye-contact and limited non-verbal gestures
- Little interest in other children or adults and/or aggression towards peers
- Repetitive actions and rituals (e.g., lining up toys)
- Special or restricted interests/obsessions (e.g., watching videos/DVDs repeatedly)
- Attachment to objects (e.g., always has particular object in hand)
- Marked Distress at changes in routine or environment
Featured Organization: The Down Syndrome Centre
We thank the Down Syndrome Centre for allowing us to reprint their copyrighted article. For more information about this organization please visit The Down Syndrome Centre
Colin Reilly is an educational psychologist who has been working with children in the area of intellectual disability for the past three years. His research interests include Autism Spectrum Disorder and genetic syndromes associated with special educational needs including Down syndrome.
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