People with intellectual disability may have problems with learning, communication, thinking, solving problems and remembering. The way a person’s intellectual disability impacts on them may be mild, severe or profound. To receive a diagnoses of an intellectual disability, formal testing needs to occur, usually by a psychologist (Raising children network Australia, 2015). Usually if a child is under 6 years of age, the preferred term is ‘developmental delay’ and children will be diagnosed with an intellectual disability after the age of 6 years if they meet criteria, however not all children who have a developmental delay are diagnosed with an intellectual disability (The State of Queensland, 2015).
Although children develop at varying rates, the following signs may indicate that a child you are working with has a developmental delay or intellectual disability:
- They are slow to learn how to sit up, crawl or walk compared to other children their age.
- They are delayed in their language or have ongoing trouble talking
- They have difficulty solving problems.
- They have difficulty with self-care tasks such as getting dressed, toileting or feeding themselves, compared to their peers.
- They have difficulty adhering to social norms or rules.
- They have behavioural issues and have trouble seeing consequences of their behaviour (The State of Queensland, 2014; American Academy of Pediatrics, 2015).
Refer to the practice guide Physical and cognitive developmental milestones.
The following table provides an overview on ways to improve communication when engaging with a child or adult with intellectual disability. It’s important to remember that a person’s skills, communication ability and how they understand information will differ depending on the person, just like anyone.
|Use simple, everyday language.||
Don’t use acronyms, jargon, complex words or long sentences.
|Always allow for plenty of time when talking with a person who has an intellectual disability.||
Don’t rush or pressure a person who has an intellectual disability. If you don’t have enough time to go at the person’s pace, reschedule your time with the person to a more suitable time.
|Build rapport with the person and start the conversation with something easy and of interest to them.||
Don’t avoid building rapport and move straight into asking questions to the person.
|Look at the person and talk directly to the person.||
Don’t talk to the person through their companion or support person, unless the person has requested this.
|Let the person talk using their own words and own story. Wait to hear their story, then ask for clarifying information.||
Don’t ask multiple questions in the one sentence, ask leading questions, or intervene when the person is trying to tell their story.
|Invite the person to tell you if they don’t understand or aren’t sure of what you’re saying.||
Don’t assume that the person will tell you they aren’t understanding what you’re saying.
|Give the person time to process and respond to what you’re saying. Even if this feels uncomfortable for you, the person may need this time to think and respond.||Don’t continue talking or move to a new topic if a person hasn’t answered you immediately.|
Focus on one topic or piece of information at a time.
Don’t move quickly from topic to topic or talk rapidly about different things.
(Adapted from Intellectual Disability Rights Service, 2009; Surrey Place Centre, 2011).
Autism spectrum disorder
Autism Spectrum Disorder (ASD) is a cognitive and developmental disorder that affects a person’s cognition, communication and behaviour. People with ASD can have impairments that range from mild to severe, which is why it is called a spectrum disorder. No two people who have ASD are the same.
The following information from Autism Queensland (2019) and The Raising Children Network Australia (2019) provides some characteristics of a person diagnosed with ASD. A person diagnosed with ASD may exhibit some or many of these characteristics.
- They may experience difficulty with:
- Social interaction
- Communicating with others
- Understanding what others are feeling and thinking
- Maintaining eye contact
- Interpreting others’ body language
- Challenging behaviours in response to stress or environmental changes
- Preoccupation with specific topics, including outstanding skills in certain areas
- Getting upset or worried if routines change without warning
- Repetitive behaviours (body rocking, flapping hands)
- Intense interest or intense aversion to stimulus such as lights, noises or textures
- Taking something someone says literally.
ASD can become noticeable in infancy or early childhood, and can be diagnosed from two years of age. If you suspect a child has ASD, arrange diagnosis as soon as possible, as early intervention makes a significant difference to a child’s lifelong outcomes.
The Raising Children Network Australia provides key information on the early signs of Autism for children who are 0-3 years old.
Even if someone has ASD, it doesn’t mean that they don’t want people to be close to. People with ASD still have emotions and love to have friends, even if it can be difficult at times.
This animated video looks at the key characteristics of Autism and what it’s like living with Autism.
Foetal alcohol spectrum disorder
Foetal Alcohol Spectrum Disorder (FASD) is a lifelong condition that occurs in a person whose birth mother consumed alcohol during pregnancy. Children in care are a high risk group for FASD. The amount and frequency of the alcohol use during pregnancy can influence the level of damage done to the brain. A person with FASD may have difficulties with impulsivity, attention, physical activities, language, memory, learning and behaviour (FASD Hub Australia, 2019; No FASD Australia, 2018). For a list of difficulties faced by children and young people who have FASD, visit the FASD hub for further information.
“The effects of FASD vary considerably and it is sometimes referred to as the ‘invisible disability’ as it often goes undetected, whether it be overlooked, ignored, attributed to another known non-genetic condition or even simply blamed on ‘poor’ parenting or post birth environments. … FASD is often not noticed until the child reaches school age when behavioural and learning difficulties become more evident”.
(No FASD, 2018).
For a child to be diagnosed with FASD, there needs to be evidence of prenatal alcohol exposure and severe impairment in three or more domains of central nervous system structure or function (such as cognition, language, affect regulation, memory, and attention). The Australian Guide to the Diagnoses of FASD developed in 2016 for the Australian Government Department of Health provides a diagnostic instrument for clinicians to diagnose, refer and manage FASD. Refer to Appendix A4: Information on FASD diagnostic assessment for individuals and caregivers of this guide for useful information on obtaining a FASD diagnosis including what is involved in getting a diagnosis, what documents are required for a diagnosis, and why a diagnosis is important.
This short video provide a snapshot on FASD including the signs of FASD and the importance of diagnosis.
FASD is a disability that can be prevented. There is a broad scope of research that supports the viewpoint that there is no safe amount of alcohol a woman can consume during pregnancy, and that not drinking is the safest option. When working with parents who are planning or expecting a baby, educate them on the risks of FASD and support them to lead an alcohol free lifestyle.
The FASD Parent toolkit for parents, caregivers and families was developed by the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD). It includes information on FASD diagnoses, characteristics, interventions and strategies, and supports for children and adults who have FASD.
Attention deficit hyperactivity disorder
While most young children have a limited attention span or limited awareness of the consequence for their behaviours, Attention deficit hyperactivity disorder (ADHD) is a chronic disorder that can have a significant impact on child and family functioning if left undiagnosed and unsupported. Children who have ADHD exhibit hyperactive, inattentive and/or impulsive behaviours.
- Seems non-responsive when you talk to them or ask them to do something.
- Poor sense of time.
- Inability to follow instructions.
- Forgetfulness of everyday things and losing belongings.
- Getting distracted or bored before finishing a task or avoids tasks that require a lot of mental effort.
- Inability to pay attention.
- Fidgeting or inability to be still.
- Running away.
- Climbing on structures, even if deemed unsafe or asked not to do so.
- Inability to remain sitting in the classroom.
- Difficulty sleeping, staying asleep or getting to sleep at night.
- Difficulty engaging in quiet play or activities.
- Being disruptive in groups or classrooms.
- Rushing through tasks to get them done with little attention.
- Talking or acting impulsively without regard for the consequences.
- Quickly getting excited about something then quickly losing interest.
- Difficulty persisting with a task.
- High risk behaviours, particularly in adolescence, such as using drugs, impulsive sexual interactions, joyriding or shoplifting.
(The Royal Children’s Hospital Melbourne, 2018; Raising Children Network Australia, 2019).
If a child you are working with is suspected to have ADHD that has not been diagnosed, having them seen by a General Practitioner is a good place to start. They may then be referred onto a paediatrician, psychologist or psychiatrist. Early diagnosis is critical to support a child who has ADHD and their family. In addition to the pressure that ADHD can put on a child and their family, other difficulties may also develop in a child who has ADHD such as conduct disorder, oppositional defiant disorder, anxiety or depression (Raising children network, 2016). The factsheet ADHD-Ways to help a child at home and school is a useful resource for parents or caregivers on supporting a child who has ADHD. For more information and support on ADHD, refer to the Raising Children Network.
As with many other disabilities, the signs and symptoms of ADHD can be similar for children who are experiencing traumatic stress. The resource Is it ADHD or child traumatic stress? A guide for clinicians (2016) developed by the National Child Traumatic Stress Network explains how symptoms of child traumatic stress and ADHD differ and overlap, and how understanding these differences can help assess and treat children more effectively.
Epilepsy is a neurological condition that causes a person to have seizures. During seizures, abnormal excessive electrical activity in the brain causes a person to convulse (muscles jerk), fall, or behave differently such as stare into space or not respond when spoken to. A person with epilepsy can have more than one type of seizure.
Epilepsy affects children and adults. It is more often diagnosed during childhood and may co-occur with other disabilities including developmental delay, intellectual disability, Autism Spectrum Disorder and Cerebral Palsy.
The overall prevalence of epilepsy in the Australian population is estimated to be 0.6% and the overall prevalence of epilepsy in Aboriginal and Torres Strait Islander people is estimated to be 1.2%. (Australian Institute of Health and Welfare, Epilepsy in Australia).
There are different types of seizures which can be grouped into either focal onset or generalised onset seizures.
Focal onset seizures (or partial seizures) arise in one part of the brain and may be subtle, unusual, go unnoticed or may be mistaken for daydreaming. With a focal onset seizure a person may be fully aware of what is happening but may not be able to respond (simple partial seizure) or their awareness may be affected and they may appear confused, vague or disoriented (complex partial seizure). A focal seizure may remain in one part of the brain or it may spread to other areas of the brain causing a tonic clonic-seizure.
Generalised onset seizures occur when both sides of the brain are affected, a person may lose consciousness. These include generalised motor seizures which involve stiffening (tonic) and jerking (clonic) known as tonic-clonic (previously called grand mal) seizures; or generalised non-motor seizures which involve brief changes in awareness, staring and some people may have automatic or repeated movements like lip-smacking.
The following are types of generalised onset seizures:
- Absence – a sudden lapse in awareness and responsiveness that looks like daydreaming or staring spells
- Tonic-clonic – the body stiffens (tonic) then the limbs jerk (clonic)
- Myoclonic – sudden short single jerks of a muscle or group of muscles (lasting no more than 1-2 seconds)
- Tonic – occurs when person is asleep or awake, involves a brief stiffening of the body, arms or legs and the person may fall if standing or sitting
- Atonic – brief seizures causing sudden loss of muscle tone, person often falls to the ground or will have sudden head nod if sitting
- Clonic – jerking in various parts of the body (uncommon).
(Epilepsy Action Australia, 2020, Seizure Types and Classifications)
Understanding the triggers for a person’s seizures can help reduce the incidence of seizures. Some people’s seizures may have multiple triggers. Anything that interrupts normal connections between brain cells can cause a seizure, such as sleep deprivation, a high fever, stress, high or low blood sugar, taking other medications (eg: sedatives or sleeping pills), brain concussion or flashing lights (for children with photosensitive epilepsy). When epilepsy medication is missed, taken erratically or suddenly stopped, it may trigger severe seizures or a cluster of seizures in some people with epilepsy. (Epilepsy Queensland, Living well with epilepsy – Seizure Triggers)
Some children can be born with a rare syndrome such as Dravet syndrome or Lennox-Gastaut syndrome, characterised by prolonged and frequent seizures that can be difficult to treat as they don’t respond well to anti-seizure medication.
Refractory epilepsy or drug resistant epilepsy happens when the anti-seizure medication isn’t bringing the seizures under control. It is estimated that around 1 in 3 people with epilepsy will either be born with epilepsy that is resistant to anti-seizure medication or their epilepsy becomes resistant to medication over time.
When child first has a seizure
The first time a child has a seizure, they should see a general practitioner or be taken the child to the emergency department at the hospital, depending on the seriousness. If it is possible, time the seizure, take notes about the child’s behaviour during and after the seizure and any notes about the events leading up to the seizure. This is useful information to provide to the child’s doctor or medical specialist. A child who has had two or more seizures that have no obvious cause (illness, fever) should see a medical practitioner for testing and diagnosis.
While the first appointment may be with a general practitioner, it is likely they will refer the child to a medical specialist such as a paediatrician or a paediatric neurologist who specialises in treating epilepsy. To determine the type of epilepsy the child has, the medical specialist will perform a clinical assessment gathering detailed information about the child’s seizures, medical history, family history, child’s development, learning and behaviour, sleep patterns and anything that may have triggered the seizures. Diagnostic tests may also be performed to confirm the type of epilepsy and possible cause.
The primary treatment of epilepsy is anti-seizure medication (also called anti-epilepsy or anti-convulsant medication). This medication helps prevent seizures from occurring or reduces the severity and frequency of seizures, however it does not cure the child of seizures. Epilepsy medication needs to be given to the child – at the correct dose and at the same time each day (as prescribed by a medical specialist or doctor) – to maintain appropriate levels of the medication in the child’s system and maximise its effectiveness. Some anti-seizure medication may have side effects, which should be monitored and reported to the treating doctor.
Procedures for when medication is missed (which happens) should be provided by the treating medical specialist or general practitioner and followed. Missed medication may trigger a seizure in some people with epilepsy. If a person only takes one anti-seizure medication a day, missing one dose is more likely to cause seizures than for a person who takes two or three doses a day. It is usually best to take the missed dose once it is remembered, but it is not recommended to take the missed dose if it is already time for the next dose.
Regular medication reviews help ensure the child is receiving the most effective anti-seizure medication. Medication reviews are about ensure the person gets the right medication (one with minimal side-effects), the right dose, at the right times. Sometimes a blood test will be required before medication reviews to assess the concentration of the medication in the blood, especially if the child has had their medication dose increased or started a new anti-seizure medication. This helps the doctor decide how to adjust the medication.
First aid management
The treating medical professional will provide the carer or parent with advice on how to manage a child’s seizures – what to do during a seizure and post-seizure and when to call an ambulance. It is recommended for a child with epilepsy to have an Epilepsy Management Plan, which describes the types of seizures, the triggers for seizures, how the child should be supported during and after a seizure, what information should to recorded regarding the seizure and when to call an ambulance. The Epilepsy Management Plan can go with the child (to school, respite, visiting family and friends, in the community) so that carers/parents/teachers will know how to respond when the child is having a seizure. Templates for Epilepsy Management Plans are available on Hospital and Epilepsy organisation’s websites.
Recording seizure information
Keeping a record of the child’s seizures (when, frequency, duration, triggers, recovery behaviours) will help inform medical specialists decision making on the most effective treatment of the child’s epilepsy. Seizure diaries can help with this task. It may also be useful to record the child’s seizure on a smartphone to help with treatment (and diagnosis).
There are a variety of seizure monitors available for children to use during the day and at night-time during sleep. A seizure monitor will not prevent a seizure from happening, however it will alert others when a seizure is happening. An example is a bed sensor mat that alerts carers/parents when a seizure is occurring while the child is asleep so the carers/parents can provide emergency medical care. There can be limitations to monitors as they generally only detect repeated shaking or jerking movements (such as in a tonic-clonic seizure).
While the NDIS expects families or carers to look after the daily support needs of children with disability including their health, they will fund a child’s epilepsy support if the support needs are more than the parent or carer is able to provide. These supports would relate specifically to the child’s epilepsy support and may include:
training of a child’s support worker, where relevant
- additional hours of support for seizure monitoring and support
- assistive technology such as seizure monitors.
For more information about NDIS supports for people with epilepsy: What types of epilepsy supports do we fund? | NDIS
Australian Institute of Health and Welfare, 2019, Epilepsy in Australia, updated March 2022, https://www.aihw.gov.au/reports/chronic-disease/epilepsy-in-australia/contents/how-many-australians-have-epilepsy
Epilepsy Action Australia, 2020, Seizure Types and Classifications, Seizure Types and Classification - Epilepsy Action Australia.
Epilepsy Queensland, 2020, Living well with epilepsy – Seizure Triggers, Seizure-Triggers-2020.pdf (epilepsyqueensland.com.au).
PowerPoint Presentation (epilepsy.org.au) Fact sheet
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