14 Q & As about ASD

No two children (or adults) with autism spectrum disorder are the same and individuals can vary enormously from one to another. Living and working with people with ASD is never dull. It is filled with challenges but it is also exciting working alongside families to see these unique children grow and develop. As a parent of a young adult on the spectrum and having worked with many children with ASD over many years I have learned a lot but there is always more to learn. In the following weeks we will look in more detail at topics related to communication, social and emotional development. This post aims to give a starting point by looking at some of the common questions that people ask about ASD.

1. If there is so much variablity what are they key things that individuals share that mean they have "autism spectrum disorder"? Autism is considered a “pervasive developmental disorder”. “Pervasive” meaning it effects all areas of a person’s life and “developmental” meaning it begins in early childhood. It is also considered part of the “autism spectrum”. “Spectrum” meaning it can include a wide range of characteristics, abilities and challenges. So adults and children with autism do vary widely in their learning ability, behaviour and other characteristics yet all share some common challenges.

All people on the “autism spectrum” have some challenges with:

  • social interaction,

  • communication,

  • and restricted or repetitive interests or activities.

2. What is meant by "difficulties with social interaction"? This can vary from being withdrawn and avoiding social contact through to people who try to interact with others but appear odd or inappropriate at times. They may have difficulty understanding the thoughts and feelings of others and may lack sympathy or empathy. They may have difficulty understanding how to behave in social situations and may not understand the unwritten rules of social interaction or in the case of children, social play. They may have difficulty using eye contact and facial expressions in a social way and they may have difficulty understanding the expressions of others. Children may have difficulty joining in with others and sharing toys and games and may prefer to play alone. They may like to do things their own way and have difficulty taking into account the needs and interests of others.

3. What about difficulties with communication? This can vary from people who have no speech or very limited communication through to people who can speak very well but may have difficulty with the social aspects of communicating. They may have difficulty taking turns in a conversation and may dominate the interaction or get stuck on a favourite topic. They may be very literal and not understand more abstract meanings. They may ask excessive questions or repeat things that they have heard somewhere else such as on TV or in a movie. They may not understand that certain things are not appropriate to talk about in certain places or with certain people and so may appear blunt or inappropriate. They will also have difficulty with the nonverbal aspects of communicating such as understanding and using eye contact, facial expressions and tone of voice. They may use a flat or unusual tone or even sound as though they have an accent though they do not come from another language background.

4. So what is meant by "Restricted and repetitive interests and activities"? This also can vary widely depending on the person. What people with autism have in common is the strong focus they have on one, or a limited range of activities. This may range from topics such as dinosaurs, transport timetables or ancient Egypt, to a certain movie, TV show or character, to a very simple activity such as watching a favourite object spin, or lining certain things up over and over. What people with autism have in common is the intense level of their interest and the long periods of time they can spend doing their activity. Often this means that they may have little interest in other activities not related to their topic of choice and spend most of their free time doing, talking about or thinking about their interest.

Actvities can also be restricted because the person feels uncomortable with change. Often people with ASD like to follow a consistent routine in familiar activities and resist changes to this. This may mean wanting to do daily activities in the same way, at the same time each day. It may mean eating familiar foods and not liking to try new ones or wearing familiar clothes and not liking to wear something unusual or unfamilar. When a change is forced this may result in discomfort or anxiety or even in some, particularly young children, emotional meltdowns.

5. Are there any other common challenges? Many people with autism show unusual or repetitive movements such as: flapping, rocking, toe walking, hand or finger movements, repetitive movements with objects such as spinning, lining up, sorting, flicking, repeatedly turning things on and off or opening and shutting things. Often these behaviours help children feel calm when they are anxous or upset, but sometimes they are simply enjoyable. Many people with autism also show sensory issues such as over sensitivity to noises, smells, textures, certain clothes or foods or they may seek out sensory experiences by touching, looking closely at things or by smelling or licking things.

6. So what is Asperger’s syndrome? Some people were diagnosed with Asperger's syndrome prior to when the new DSM V criteria was released in mid 2013. These people are now included under the diagnosis of "autism spectrum disorder". Asperger's syndrome was used to describe people who had normal or above intelligence and normal early languauge development but still showed the charactistics of ASD. The information on Asperger's syndrome is valuable in understanding the needs of bright, articulate people with ASD.

7. Can people with ASD also have other areas of difficulty? All people with autism share these three areas of difficulty, but have their own personality, and vary according to their intelligence level, family and cultural background. Some may have other diagnosis such as ADHD, language delay, developmental delay, intellectual disability or learning problems while others do not. Some people with ASD are also intellectually gifted, which presents it's own challenges. Many people with ASD experience anxiety and depression. As Sue Larkey states on her website “to know a person with autism is not to know autism”. Each person with autism requires support and understanding tailored to their own unique needs.

8. Is there anything good about ASD? Just as they share challenges people with ASD also share many positives. To name a few: people with ASD are extremely honest, they don't tend to lie or manipulate people. They often have excellent memories and attention to detail. They live in the moment and are not bothered by social expectations. They can often see things in a new or different way or offer a unique solution or problems. They are passionate and committed to what they do and many people who have been outstanding in their chosen field show characteristics of ASD. People with ASD have made many important contributions to areas such as science and the arts.

9. What does "high functioning" and "low functioning" mean? These terms relate to a person's ability in managing day to day tasks. "High functioning" means that the person can cope with many daily activities at or close to a level typical of others their age. They need support primarily around social and sensory challenges. As a child they are likely to go to a mainstream school and as an adult may be in mainstream employment. This does not mean they do not need any support however. The level of support needed varies between individuals depending on the extent of their social and sensory needs. Someone decribed as "low functioning" may have more learning and language challenges and may need modified education and support for daily activities throughout their life. Early intervention has shown to reduce the level of long term support that many individuals need by helping to develop language, learning and social skills and reduce the impact of sensory issues, hence children's levels of functioning may change with time.

10. If I think my child has autism what do I do? A diagnosis opens up access to support and understanding. Early intervention is vital to maximise a child's potential. The process for getting a diagnosis and follow up support varies depending on where you live. Talking Matters provides diagnostic assessments for children in South Australia and there are other options available in SA which are listed on the Autism SA website. In other areas discuss your concerns with your doctor and ask to be referred to a paediatrician that specialises in autism.

11. Will my child grow out of it? ASD is a lifelong condition so people do not grow out of it. They do however learn and develop. Their needs and abilities change over time and with support many people with autism lead full and successful lives. Support in adulthood may vary from being fully dependant to needing just a little support with relationships. The more support children receive when they are younger the better they will do when they are older.

12. What causes ASD? ASD is thought to be at least partly genetic as it tends to run in families. Scientists are not clear about the exact genes or causes as yet. It is clear though that ASD is not caused by the way a child has been raised.

13. If my child is bright and doing well at school, do they need a diagnosis? Parents often worry quite appropriately about “labelling” their child. A label will not change a child. They will still be the same person with the same mix of skills, challenges and personality. A label can however help others to understand the child better and can sometimes help the child to access more appropriate support. Sometimes when children do not have a diagnosis they are incorrectly labelled “rude” or “naughty” because of their social challenges.

If a child has a label parents do not need to share this with everyone. A child’s diagnosis need only be shared when there is an advantage for the child to do so, such as to help school understand and support them. For older children understanding their diagnosis can help with self -understanding and acceptance. If parents are unsure psychologists or autism associations can help parents talk to children about their diagnosis in a positive way. A diagnosis can also help adults understand themselves better.

14. What kind of support does my child need? Support needs vary from child to child so each child should be individually assessed to determine what is most important for them. Many children benefit from speech pathology for communication skills, occupational therapy for fine motor and sensory issues and psychology for behavioural and emotional issues. All these professionals also help children to develop social skillls in different ways. Children may need extra support at school. Support to develop relationships may be needed for both adults and children. Some adults may need support to manage in further study or in the workplace.

Talking Matters provides individualised speech pathology, occupational therapy and pscyhology support for children with ASD and their families as well as some group programs for things such as social skill development. To find out what we can offer you and your child click here.

We are also excited to have Michelle Stevens, our new autism and disability consultant starting with us. Michelle has worked in the autism field for many years and is able to support families with help with daily tasks such as managing behaviour, sleeping and toileting as well as making of visual supports. She can also help families through the maze of funding options. To find out more about Michelle's service click here.

Our services are available through Fahcsia Helping Children with Autism funding and through the National Disability Insurance Scheme for eligable families as well as private health funds and in come cases Medicare rebates are available. To explore your funding options click here.

We will be posting blogs on the topic of autism throughout August so why not follow so you don't miss out.

More information about autism is available to download from the download section of the Talking Matters website. Our Facebook, Pinterest and Twitter pages are a great way to keep up to date with what's new. browse our website to find out how Talking Matters can help you and your child.

For further information you might also like to try these valuable websites:

Sue Larkey

Tony Attwood

Jo Brenecki

Speech Pathologist

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