I'm worried my child might have ASD

Finding out for sure: getting a diagnosis

The picture below shows the steps you might encounter along the path to ‘getting a diagnosis’ of autism spectrum disorder (ASD) for your child. There can be several ways to reach the stage of formal diagnosis. 

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.

You and your child

You know your child best. Families’ descriptions of their child are an essential part of diagnosing any illness or developmental problem. So it helps to understand what diagnosis involves and to be prepared to offer relevant observations to the professionals working with your child.

GP or child health nurse

You might be able to ‘self-refer’ your child for diagnostic assessment. Even so, it can still be a good idea to visit your GP or child health nurse first, to talk through the various options.

If you choose to have a private assessment, you will definitely need your GP’s referral to claim Medicare rebates. A referral is a letter from your GP requesting a service from a specialist practitioner or assessment team. You need a referral to make an appointment with most medical specialists – for example, child psychiatrists and paediatricians – and to gain Medicare rebates for consultations with them.

Families sometimes find that their GP is reluctant to refer the child for assessment. In general, GPs receive no training in spotting the early signs of ASD. It’s a good idea to take a list of the ASD ‘red flags’ to show your GP and you might need to insist on a referral.

Whether you are referred to a single specialist doctor or to a multidisciplinary diagnostic assessment team will often depend on what's available in your region. You might also need to choose between a private assessment (which might attract Medicare rebates and private health fund rebates) and a public health service assessment through your local hospital or health service. The latter is free, but you might have to wait longer.

Diagnostic assessment

Diagnostic assessment is when a qualified specialist or a team of specialists assess your child’s abilities and behaviours against specific diagnostic criteria then give you a written diagnosis, as well as a report of their findings (a ‘profile of ability’ or ‘functional profile’). Your GP, child health nurse, child specialist or State or Territory autism association should be able to advise you on local options. If ASD has been mentioned, a multidisciplinary assessment is preferable.

  •  Multidisciplinary assessment: This is conducted by a multidisciplinary team, which usually includes a doctor (paediatrician or child psychiatrist), a psychologist and a speech pathologist. The team will gather information from you and from specific tests. You will usually be able to discuss results straight away. A full report will be sent to you later. Multidisciplinary assessments are carried out by public health services and also teams working on a private basis.
  • Developmental assessment: This can used when it’s not clear what might be causing a child’s developmental delays, when there are no specialists available to carry out multidisciplinary or autism-specific assessments, or as part of a multidisciplinary assessment. A paediatrician can do a developmental assessment, as can your local hospital or health service.

Specialist child physician

  • A paediatrician is a medical doctor who has completed extra training in the medical care of children.
  • A child psychiatrist is a medical doctor who has completed at least five years of extra training (including two years of training specific to children) in the prevention, diagnosis and treatment of mental illness and emotional disturbance, using a medical approach.
  • A clinical child psychologist is a specialist in the assessment, diagnosis and treatment of mental illness and psychological problems in children.

These specialists are able to diagnose ASD by observing your child and using reports obtained from you and others who know your child. If they do give a definite diagnosis, they will generally refer your child for a full multidisciplinary or autism-specific assessment. This will yield more detail on your child’s specific symptoms, and is needed to plan the best interventions. To access the federal government’s early intervention funding, you must have a diagnosis from a paediatrician, child psychiatrist or an accepted multidisciplinary assessment team.

Diagnosis

If your child’s diagnosis is ASD, it should take the form of an official letter or set of assessment findings. This document should clearly state that your child has been diagnosed with one of the three disorders on the autism spectrum – autistic disorder, Asperger’s disorder or Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS). The document should be written by a professional such as a paediatrician, child psychiatrist, clinical psychologist or the head of a multidisciplinary assessment team.

Your child’s diagnosis might include the results of several standardised tests – your child's ‘functional profile’ or ‘profile of ability’. This gives you a clear idea of your child’s development and the severity of the ASD symptoms at the time the tests were done. It can help you measure the impact of the interventions that you subsequently use.

If your child is diagnosed with something other than ASD, the diagnosing professional will give you information about what to do next.

 

While you're waiting: starting intervention

If you’re on a waiting list for a diagnostic assessment, it’s likely you will have already started some sort of therapy for your child. If this is the case for you, the simple message is – keep doing what you’re doing. If possible, do more. On the other hand, if you’re on a waiting list for diagnostic assessment and haven’t yet started any therapies, it’s a good idea to begin some as soon as possible.

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.

 

Generic early intervention

Generic early intervention means intervention that is not necessarily autism-specific. It provides support and therapies for young children who have developmental delays or disabilities as well as their families. Try to find your local early intervention providers as soon as possible and discuss your child’s needs with them. It can also help to seek advice from professionals who know your child – for example, your GP or child health nurse. They should be able to suggest what to do, where to start, and how to access the services you require.

Speech and language therapy

Communication difficulties are found universally in adults and children with ASD. Speech therapists can help, because they treat all areas of communication – expressive communication (getting your message across), receptive communication (understanding what others are communicating) and pragmatic language skills (the social conventions of language). Whatever kind of communication difficulty your child experiences, treatment is essential – the earlier the better. When you're deciding where and how to get started, it can help to seek advice from professionals who know your child. Try your GP or child health nurse for information about speech therapists in your area.

Occupational therapy

Occupational therapists work with children to improve their ability to take part in activities like daily living, play and self-help. Although most children who are waiting for an assessment will not have serious motor skill issues, many might have some problems with some gross and fine motor skills. Sensory processing issues are also very common – for example, sound sensitivity or food and touch aversion. All these issues can have a big impact on your child’s life and learning, so it’s good to start addressing them early. When you're deciding where and how to get started, it can help to seek advice from professionals who know your child. Try your GP or child health nurse for information about occupational therapists in your area.

Looking after yourself

It’s very common for parents to feel frustrated, worried and distressed when they’re waiting for a diagnosis for their child. This is a time when families tend to focus solely on the child. But it’s important that they also look after themselves and seek information about help and support for the whole family. Some families might feel this is a good time to find support groups. Others might prefer to wait until their child’s assessment is complete and they have a diagnosis.

Early Days workshop

The Early Days national workshop program provides information and skills to help you support your young child before and after diagnosis. Workshop topics include promoting development and learning, developing language and communication, managing behaviour, sleeping, promoting self-esteem and wellbeing, and family issues like coping with stress. The workshops also put you in touch with families like your own. There is no cost for attending the workshops, which are funded through the federal government’s Helping Children with Autism package.

Learn more about ASD and early intervention

There are lots of ways you can learn more about ASD. This website has a whole section on ASD, for example. Each state and territory has an autism association, with a telephone information service, and usually an informative website. You could also look at intervention and therapy options for your child, as well as the many financial supports available. Learning to navigate the services and support system and the associated funding maze takes time. It’s worthwhile getting a feel for these systems while you’re waiting.

You and your family: help and support

The time before receiving a formal diagnosis of autism spectrum disorder (ASD) is often described by families as the hardest time of all. You will not be alone in finding it stressful and overwhelming at times. Friendships with other families who care for a child with ASD can be a tremendous help, as can learning where to find good-quality information and support.

  • Hover over and click any step on the diagram below to read more about that step.
  • Click the map of Australia below to find contacts for each step in your region.


 

Finding out more about autism

State Autism Association
Each state and territory has an autism association, with a telephone information service, and usually an informative website. Some of the autism associations have libraries. Most will be able to put you in touch with local family support groups. Your autism advisor will be based at your state autism association.

Books and websites
There are many books about ASD. They range from medical textbooks to the personal stories of people who have ASD. There are also many ASD websites, which can offer useful advice and support to families.

Early Days workshops
The Early Days national workshop program provides information and skills to help you support your young child before and after diagnosis. Workshop topics include promoting development and learning, developing language and communication, managing behaviour, sleeping, promoting self-esteem and wellbeing, and family issues like coping with stress. The workshops also put you in touch with families like your own. There is no cost for attending the workshops, which are funded through the federal government’s Helping Children with Autism package.

Support for you

Respite and carer support
Respite simply means having a break from your child with special needs. Respite care can be provided in your home, or your child might be able to attend a respite care centre. Although respite might not initially appeal to you, many children with ASD really do enjoy it. Your state autism association or carers association might be able to provide respite help and advice. Also, every state and territory has Commonwealth Respite and Carelink Centres. They provide information about local options and can provide some respite themselves. You can search the Carelink database for respite in your area.

The National Carer Counselling Program allows carers to access a counsellor for short periods, usually six sessions, at no cost. This program is administered by your state Commonwealth Respite Centre.
 
Stress, anxiety and depression support
If you’re feeling stressed or depressed, it’s a very good idea to see your GP. Your GP can monitor how you’re managing, advise on medical treatment for stress and depression, and refer you to other professionals. Your GP can also discuss the Mental Health Care Plan with you. This Plan provides Medicare rebates for visits to a psychologist. Your GP might also be able to give advice on other supports and services in your local area.

Family support & forums
Many families and carers find ASD family support groups very valuable. They provide a chance to meet and form friendships with others in the same situation as you. Groups can be linked to family service agencies or operate independently. They can be formal or informal. Your autism association or autism advisor is likely to have details of groups in your area. Online forums also give you the chance to connect and share stories, advice and support.

Helplines can also be valuable, especially if you need on-the-spot support. Parentline is a national telephone helpline for all parents of children aged 0-18. Lifeline offers telephone counselling throughout Australia, 24 hours a day, seven days a week.

Disability support organisations
These organisations are usually regional or state-based. They might be able to help you with information and individual advocacy support. They also lobby government for better services and options for families and carers, as well as for individuals with a disability.

Family and community services
Caring for a child with special needs can be very demanding on families. There is a large network of services to assist you with parenting, family functioning, personal coping strategies and similar services. For example, the Home and Community Care Program (HACC) is a joint Commonwealth, state and territory initiative that provides community care services to frail aged and younger people with disabilities and their carers. Your local GP or municipal council should be able to help with information about this and other programs in your area.

PlayConnect
PlayConnect playgroups offer play-based learning for children with ASD or ASD-like symptoms as well as social support networks for families. Playgroup facilitators can also help families connect to resources in their local area. These playgroups are part of the federal government’s Helping Children with Autism package and are administered by Playgroups Australia. In total, 150 playgroups will be established – 50 by June 2009 and another 100 by June 2011.

MyTime
MyTime is a national program that coordinates local groups for families of young children with a disability or chronic medical condition. At your local MyTime group, you can socialise and share ideas with other families. Children attend the groups, and a helper works with them, which gives families time to chat. Each group also has a facilitator whose role is to support families, help them decide on discussion topics, and give them research-based parenting information. Groups have at least four parents and usually meet once a week for a couple of hours. MyTime is funded by the federal government.

Your relationship with your partner

Having a child with an ASD almost inevitably places greater strain on your relationship. Sometimes couples need extra support. Relationships Australia is a national organisation providing relationship support around the country. There are also many private family and relationship counsellors and therapists you can consult. Your child health nurse, GP or autism advisor should be able to point you towards local practitioners. Respite is available and might be helpful for your relationship.

Your other children

Having a sibling with an ASD can be hard for children, who sometimes might need extra attention. Some autism associations and family support groups have special programs for siblings. Siblings might also benefit from talking to counsellors or psychologists. Your GP, autism association, autism advisor or child health nurse might be able to recommend a practitioner and let you know about publicly funded support. Your Commonwealth Respite Centre and state-based disability association might be able to offer support or referral. Siblings Australia is a national organisation committed to enhancing the wellbeing of siblings of children with disabilities and chronic illness.
 

  • Last updated or reviewed 18-01-2013