Embrace difference this World Autism Day

By Dr Raj Khillan

Whether you are a person with autism, a family, a school, a community group or a workplace there are many ways you can help to increase awareness on autism.

World Autism Awareness Day (WAAD), 2 April, aims to put a spotlight on the hurdles that people with autism—and others living with autism—face every day. As a growing global health issue, WAAD activities are planned every year to increase and develop world knowledge of children and adults who have autism spectrum disorder (ASD). Joined by the international community, hundreds of thousands of landmarks, buildings, homes and communities around the world, light up in blue in recognition of people living with autism.

ASD is a developmental disorder most commonly involving problems with verbal and non-verbal communication and social interactions and play skills. In addition, children with ASD often have abnormal behaviours, interests and play. Some characteristics of autism are common to a greater or lesser extent among many people on the autism spectrum; other characteristics are typical but not necessarily experienced by all people on the autism spectrum. Thus, the word ‘spectrum’ is used to reflect the wide scope of differences in how individual people experience autism and their environment. While some people on the autism spectrum also have an intellectual impairment or disability, many others have average intelligence, while others have above-average intelligence.

1 in 70 Australians are diagnosed with ASD. The word spectrum reflects the wide range of difference that people on the spectrum experience and the extent to which they may be affected. No two people on the autism spectrum are alike, and all have unique strengths and interests. This would mean that despite having similar diagnosis all children with ASD may not have similar symptoms. Children with mild symptoms are sometimes referred to as ‘high functioning’.

Over the last two decades the reported prevalence of autism has increased dramatically from its 1995 count of around 1 in 500. Current research suggests that the increased rate of autism diagnosis is due to changes in reporting practices, and changes in the diagnostic criteria, which now includes a broader range of diagnostic features.

Although the rates of ASD have increased since the 1980s, this is due to increased awareness and changes in the way the disorder is diagnosed, rather than a growing number of people being affected. At the same time, the number of recommended childhood vaccinations has increased, and many parents worry that these two issues are somehow linked.

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A paper was published in 1998 on a potential link between ASD and the measles, mumps, rubella (MMR) vaccine, but this was later proven to be fraudulent and the medical journal retracted the paper. Since then, multiple studies have shown no association between vaccinations and ASD.

There is absolutely no association between ASD and any birth trauma, medications taken during pregnancy or formula feeding.

ASD is a lifelong disorder with no cure but the condition can be improved with early interventions. However, early interventions may include behavioural therapy, speech therapy, occupational therapy and it may help children with ASD reaching their full potential.

Spotting the early signs of autism in young children can be hard if you’re not an autism expert. Many of these signs are common to all young children but they are seen more often in children who have autism. The M-CHAT tool can used by parents for initial screening.

The Modified Checklist for Autism in Toddlers, is a 2-stage parent screening tool to assess for Autism Spectrum Disorder (ASD). The first stage being the M-CHAT-R, and second stage being a follow up if required using M-CHAT-F.

The M-CHAT-R/F is an autism screening tool designed to identify children 16 to 30 months of age who should receive a more thorough assessment for possible early signs of autism spectrum disorder (ASD) or developmental delay.

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Understanding behavioural patterns

People on the autism spectrum may exhibit non-typical skills and focus. This can include unusually intense or focused interests, including savant skills, excellent memory skills, high level of attention to details, plans, patterns and codes, either difficulties, or exceptional skills in planning and self-organisation.

Some people on the autism spectrum may behave in non-typical ways, often in response to the different ways in which they experience their environment. Such behaviours are generally a way to communicate their feelings or to adapt to a situation or may result from their heightened sensitivity to a sound or something they have seen or felt.

Some people on the autism spectrum may use this behavior as a way to reduce uncertainty and maintain the predictability of their environment. This can include strict adherence to rules and routines, repetitive body movements, repetitive use of objects, such as repeatedly switching lights on and off, or placing objects in a strict order or pattern.

Children on the autism spectrum may to a greater or lesser extent be unable to understand and express their needs and emotions, or unable to interpret and understand the needs and emotions of others. This can affect their ability to share interests and activities with other people.

Their nontypical communication styles and skills can lead to their avoidance of any social interaction and withdrawal into repetitive play and behaviour. For these reasons, people on the autism spectrum may sometimes appear distant and aloof and may have challenges in establishing and maintaining relationships.

People on the autism spectrum may also show strong loyalty and commitment to honesty.

Children on the autism spectrum may face communication challenges in one form or another. Many children with ASD have poor communication skills. Some children with more severe ASD are not able to speak. There are many children with ASD who have normal language skills but will still have problems socialising with other people. Their conversations may be one-sided; they may talk excessively, make up new languages (neologism), or repeat certain words and sounds (echolalia).

Of those who can speak, they can often use language in a limited or non-typical way. People on the autism spectrum may tend to speak their mind and to present and interpret information in ‘black and white’ concepts. Conversations may involve repeating phrases, asking the same questions over and over, or focusing only on topics that are of interest to them.

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Children on the autism spectrum may either miss or misinterpret non-verbal forms of communication such as facial expressions, hand gestures and other body language. Most children with ASD have difficulties with non-verbal communication, such reading body language and other non-verbal cues (e.g. understanding or expressing emotions through tone of voice and facial expressions). These children also struggle with more complex language, such as sarcasm, and are more likely to take what people say literally. Eye contact is also often difficult for children with ASD

Children with autism spectrum may experience non-typical sensory sensitivities and may seek to avoid everyday sounds and textures such as hair dryers, vacuum cleaners and sand. In addition, children with ASD may be unusually under sensitive or oversensitive to everyday sounds or textures. Some people on the autism spectrum may have unusual sensory interests, such as sniffing objects or staring intently at moving objects. These sensitivities and interests can lead to non-typical behaviours, often as means of adapting to and coping with the sensitivity.

A child with ASD may have many unusual ways of socialising. They may only interact with others when they need to, or they might actively talk with others but only about their own special interests.

Children with ASD often lack creativity and imaginative play. They may prefer using their senses to explore toys, for example smelling, tasting or staring at the toys rather than playing with them. Some children prefer repetitive or obsessive actions, such as lining toys up in a long line or continuously spinning a car wheel. Higher-functioning children with ASD can become intensely interested in one topic, often to the exclusion of other activities or interests.

There are also body movements that are typical of children with ASD, such as repetitive hand flapping and spinning, as well as head-banging and poor coordination. They may also adopt unusual postures or walk on their toes.

Many children with ASD can also have other difficulties, which include: restricted eating patterns, sleeping problems, anxiety, behaviour problems, emotional difficulties, learning difficulties, attention difficulties, difficulties with planning and organising.

Children with ASD can range from being severely disabled through to highly intelligent. About one child in four with ASD has an IQ in the normal range or above, but three out of four children with ASD will have some intellectual disability. The child’s level of ability is often uneven, with areas of strength and weakness.

Do not try to make a diagnosis yourself. Many of the unusual behaviours that occur with ASD are often seen in normal toddlers, which makes the diagnosis quite difficult at times.

If you are concerned about aspects of your child’s behaviour and development, see your GP and ask for a referral to a specialist paediatrician, speech pathologist or psychologist The diagnosis of ASD requires a multi-disciplinary assessment. This means a team—consisting of a pediatrician, psychologist and/or speech pathologist—will assess your child.

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Intervention programmes

Early intervention is important for helping your child reach their full potential. Your child’s treating team or specialist will help to develop an action plan for the family that can include information resources, parent training, strategies for family support, and an action plan for your child.

Choosing an early intervention program for your child with autism can be a very overwhelming and confusing process. Unlike other areas of childhood health, an autism diagnosis doesn’t come with a ready-prepared treatment plan and a network of health professionals to help implement it.

In most cases, it is up to parents or carers to do their own research and navigate their way through the multiple available options.

Whatever path you choose, remember the golden rule: Intervention needs to be INTENSIVE.

The Australian Government’s 2012 Guidelines for Good Practice recommends 15-25 hours a week of autism-specific early intervention. Sadly, most Australian children currently receive much less than this amount.

Intensive early intervention is expensive. For it to be effective the therapist: child ratio should ideally be 1:1 but at minimum 1:3. These teachers, therapists, and child-care personnel should be specifically trained in working with children with autism, have knowledge and skills required for their special needs, and another important attribute:

Unfortunately, many providers are still not offering families anywhere near the recommended 20 hours a week of high quality, autism-specific early intervention. Ensure that you thoroughly research the effectiveness of a program before making your decision and committing money to it.

Until recently, families received limited early intervention funding through the Federal Government’s Helping Children with Autism (HCWA) package, which could be used to access services provided by HCWA-registered providers. Now, as the National Disability Insurance Scheme (NDIS) is rolled out throughout the country, most families are transitioning to this scheme. It was hoped that the introduction of the NDIS would mean that all young children with autism would be able to access to fully funded early intervention programs. Regrettably, this is not proving to be the case, with many families still finding they must fight for their entitlements.

Treatment will depend of the needs of each child and the nature of their impairment and associated symptoms.

Medication may be helpful in some specific situations, especially involving some of the associated problems listed above like-sleeping difficulties, aggressive behaviour and hyperactivity.

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There is always a question about use of medicinal cannabis to control symptoms of Autism. The review of many studies demonstrates the mixed state of evidence with respect to the effects of cannabis on core symptoms of ASD. As a result, medical providers treating individuals with ASD should assess the ethical implications of a cannabis recommendation given the uncertainties associated with its utilisation at this time. As such, practitioners should consider behavioural supports accessible to the family and only those pharmacological options which are supported by evidence. Although medical cannabis appears to show promise in addressing core ASD symptoms, evidence-based recommendations are necessary to ensure safety and effectiveness.

Environmental changes may be needed for children with ASD as they prefer a structured and predictable environment and routine. Visual aids such as picture cards (e.g. a picture of a bed that a child can point to) can be very helpful to improve children’s understanding and communication and therefore reduce their stress.

Parents often ask question should my child attend a normal school? It depends on the severity of the condition. Many children with ASD are encouraged to attend regular schools. Your school can work with you to accommodate any special requirements your child may have in the classroom and in the playground. Your child may be eligible for a teacher’s aide, who can provide extra support in the classroom. There are specialist schools available for children severely affected by ASD who need more support that a regular school can provide.

People with ASD will not grow out of their condition but will learn ways to function well in society. Many adults with ASD live very comfortable, successful lives, without others being aware that they have ASD.

The writer is Director Western Specialist centre www.westernspecialistcentre.com.au


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