Autism Awareness Day - What you need to know

What is autism?

Children and adults with autism have a neurodevelopmental condition,

affecting almost every aspect of their daily functioning. Autism affects brain development in a very particular way, but there is great variability. Although the condition affects people differently, all show a wide spectrum of learning and behaviour patterns different from people without autism, across a range of severity, from mild to severely affected.

Autism can also co-occur with intellectual disability and other known genetic conditions.

Autism is a relatively new diagnosis, even though it was already described in the 1940s. Because autism is complex and variable, it is only since the 1990s that we are diagnosing more children and adults with the condition.

We are now encouraged by people with autism themselves to talk about autism as a condition rather than a disorder or a disease. There is a stigma attached to autism that needs to be removed. People with autism and their families are part of our communities but are often excluded.

The aim of World Autism Awareness Day is to increase awareness, knowledge and understanding of the condition and work for greater inclusion of children and adults with autism, and their families. Because many families with children with autism visit our department for services, we want to contribute to this important day.

 

How prevalent is autism?

The condition seems to occur world-wide and is very common. In the US, one out of 68 eight-year-old children is now being diagnosed with autism. It appears that more boys than girls are diagnosed, but researchers think it is because girls are naturally more socially orientated than boys. We do not have statistics in South Africa, but autism is also prevalent here, and found in all communities.

 

What are the symptoms of autism?

Children and adults with autism show significant difficulties in the following areas, already from an early age:

 

1.         Social reciprocity:

Children with autism have difficulty with two-way communication, social interaction and sharing of emotions. They do not really understand how relationships work. Because they do not respond in a typical way or do not respond at all when approached, it is very difficult to connect with them. Despite these challenges it is remarkable to see how families succeed in bonding with their children.

 

2.         Behaviour:

People with autism may show repetitive movements, they generally do not like change, they usually have restricted interests, an intense focus on certain things or topics, and their brains process incoming information differently.

Information processing difficulties mean that they may be very sensitive and over-react easily, or avoid certain sensations and eye contact, or actively seek sensations such as moving around and are drawn to a mirror, or under- react and appear as if they do not notice what is going on around them. It may appear as if they are in their own worlds. They may also show adverse reactions to specific sounds, textures, taste or smells. The adverse reactions to textures, taste and smells particularly affect their eating and drinking. Children with autism may also play with objects in a particular way, such as lining up of objects. Young children with autism may not have pretend play.

 

3.         Speech and language:

Difficulties in speech and language appear from early on. Babies and toddlers with autistic symptoms also show late language emergence. Their first words only appear later in life, not at 10-12 months in the case of typically developing children. Infants with autistic

symptoms do not babble or use gestures such as waving goodbye or clapping their hands by 12 months. Children with autism appear to ignore speech, and families often think the child is deaf or hard of hearing. This behaviour actually shows that they have auditory processing difficulties. Although a hearing loss may be present, children with autism in general do not listen well to speech when their families talk to them. That is why they do not easily learn to understand language.

A hearing test is very important. We also know that children with autism can hear when they show echolalic speech. This means that they repeat exactly or partly what others say, or what they hear over TV or the radio, immediately or later. This means that they do not have a speech problem. The problem is language learning. Although they repeat what they hear,

they often do not understand what they say. That is why children with autism in South Africa may repeat words or sentences in English, the dominant language used on TV, even when their home language is different.

Echolalia is considered a positive sign, as it may show that the child is responding to, or agreeing with, what the parent is saying. Echolalia can be used in speech-language therapy to help a child learn language. Some toddlers who are later diagnosed with autism show regression of skills, including loss of speech around 18 months of age. Some children with autism learn to talk later on, but never talk much. Some children with autism show advanced abilities for their age, such as reading without being taught. If the child does not understand language well, he/she will also not understand what is read.

 

How early can we tell if autism is present in a child?

All difficulties in social interaction, behaviour and speech and language

learning can already be present in babies. These difficulties interfere with every aspect of everyday life, such as learning, playing, eating and sleeping.

 

Early intervention can make a difference

If children with autism are identified early in life, and they receive intensive early communication intervention with parent coaching, occupational

therapy and a specialised preschool programme, they can improve significantly. A child’s brain is more adaptable and plastic early in life than

later. The brain can be moulded to form new connections to learn language, concepts and skills when the child is very young.

 

How long do autism difficulties persist?

Depending on the severity, children and adults with autism may require lifelong support.

 

What can families do? Which services are available?

A child with autism does not outgrow the condition without help. Although public and private services and schools are limited in South Africa, families may access the following:

In South Africa a diagnosis can made by a medical specialist, i.e. a paediatric neurologist or a child psychiatrist, based on observed behavior,

• Early communication intervention and parent coaching (provided by speech-language therapists)
• Occupational therapy
• Hearing testing by audiologists
• Family support by educational and clinical psychologists
• Teachers with special education training
• Safe medical treatments are important
• There is no known cure for autism, but researchers are currently testing medication that may alleviate the social difficulties of autism. It will still take some time before we know if this medication is effective and safe to use in children and adults
• Some treatments advertised online and elsewhere can be harmful
• Some behaviour symptoms of autism can be alleviated by certain medication or a special diet, but must be overseen by a specialist

 

Autism is not …

• when somebody is just socially clumsy
• because the child does not want to talk
• an intergenerational curse. Parents are not to be blamed, especially not mothers
• caused by poor parenting
• caused by poor discipline at home
• caused by immunization against childhood diseases

 

What causes autism?

Autism is a very complex condition. It is thought to be caused by multiple factors, with genetic, epigenetic (factors changing the expression and functioning of genes, but not the genes and the DNA) and environmental factors acting in combination through various pathways. Hundreds of genes have already been identified in families who have members with autism. Because a child’s developing brain is also very vulnerable to environmental influences it is not surprising that environmental factors can play a role in autism. There appears to be a dynamic interplay between genetic and environmental factors. Currently, it appears that advanced age in both the mother and father, and birth complications are strongly associated with autism.Obesity and diabetes in mothers and emergency caesarean section are less strongly, but still significantly associated with autism in their children.

Research is ongoing and fortunately many countries are funding autism research well. Autism research in South Africa is also expanding. In future we will know more about autism and what works best.

 

Where can help be obtained in Pretoria?

For a diagnosis: Department of Paediatrics at Steve Biko Academic hospital or specialists in private practice

Speech-language therapy and occupational therapy: Public hospitals and private practices. Information about speech-language therapists and audiologists in your area can be obtained from www.saslha.co.za

Clinic for High-Risk Babies (CHRIB) at the University of Pretoria for a speech-language therapy and audiology team assessment and early communication intervention

Unica school and private special schools

Information: Autism South Africa in Braamfontein, Johannesburg, www.autismsouthafrica.org

 

In conclusion

• Children and adults with autism need compassion, understanding and support, and so do their families.
• Early intervention can make a difference.
• Changing attitudes can make a difference.
• Inclusion can make a difference