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My child has an ASD diagnosis, what do I do?

Helping your child: finding early intervention

Early intervention is the term used to describe therapy, education and family support programs that can help a child’s development. It is the package of intervention that you will put together to help your child develop as well as possible. Many types of early intervention are available for children with autism spectrum disorder (ASD) – you can find out about them on this website. You will find that your child will probably benefit most from having more than one type of intervention during early childhood.

  • 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. 

ASD diagnosis

This is an official letter or set of assessment findings, which clearly states that your child has been diagnosed with ASD. It can be written by a professional such as a paediatrician, child psychiatrist, clinical psychologist or the head of a multidisciplinary assessment team. Ideally, it will include results of several standardised tests. It will give you a clear idea of your child’s developmental profile and the severity of the ASD symptoms at the time the tests were done. This profile can help you measure the impact of the interventions that you subsequently use.

Learn more about autism spectrum disorder (ASD)

Before your child’s diagnosis, you probably read up on ASD. After diagnosis, you should ensure you’re familiar with it, and with your child’s specific symptoms. Then the major task is learning about treatment options. This will take time, but it is time well spent.

You and your family will need to decide on the best package of early interventions for your child. You will get advice from professionals such as paediatricians and your autism advisor. In the end, it's your decision and should suit your child and family.

Early Days workshops

Early Days workshops will give you information and skills to help you support your child with ASD before and after diagnosis. They will also show you how to do simple early intervention activities in your home to create the best learning environment for your child. 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 are free, and funded through the federal government’s HCWA program.

Autism advisor

Each state and territory autism association has an autism advisor service funded by the HCWA program. Autism advisors assist families and carers of children aged 0-7 who are diagnosed with ASD. Advisors link families to the Early Intervention Service Provider Panel and provide advice about community services that can assist families. Your advisor will also be able to inform you of the evidence based therapies available and identify service providers in your area, both those funded by government and those you need to fund privately (but which may attract Medicare rebates.)

Early intervention options

Early intervention, or early childhood intervention, describes therapy, education and family support programs that can help a child’s development. Early intervention services can be provided by government agencies, not-for-profit organisations or private therapists. Some of these specialise in autism-specific early intervention. Others support children with a range of disorders – these are called generic services.

Government-funded early intervention provider
Funding packages worth up to $12 000 (up to $6000 per financial year) can be used to help you ‘purchase’ early intervention services from providers on the Early Intervention Service Provider Panel. These packages are for children aged 0-7, though they must have received a diagnosis of autism before the child's sixth birthday. You can access this funding only through the autism advisor services, and you need an ASD diagnosis.

The panel is made up of providers delivering evidence-based, multidisciplinary interventions.

Once you’re registered, your autism advisor will be able to give you an up-to-date list of the Panel members in your area and can discuss with you which services might best suit your child. Initially, the range of options might seem overwhelming. But remember that your understanding of funded options will grow, as will your understanding of your child’s unique needs and strengths. You can read more about different types of ASD early intervention in our Parent Guide to Therapies.

Allied health (therapy) services
Allied health services or allied health providers are supplementary or additional therapy services that can benefit children with developmental delays and disabilities. In relation to ASD, these services usually include speech pathologists, occupational therapists and psychologists.

  • Public services: Most states and territories provide some allied health services to children with ASD, through the state or territory health or disability services departments. Services accessed through government departments are generally provided at no cost to families. On the downside, there are usually long waiting lists for public services, which might also be rationed because of high demand. (For example, speech therapy might be provided weekly but only every second school term.) It’s generally worth putting your child’s name on waiting lists – it will get to the top eventually. Meanwhile, you can access allied health services privately, using Medicare rebates if your budget can stretch to it.
  • Private services: Private allied health services can offer therapies delivered by individual providers or multidisciplinary teams. Many health insurance companies offer rebates for a number of visits to an allied health service, provided you have the appropriate ‘extras cover’. Medicare rebates are available for allied health services through the HCWA package as well as through the Enhanced Primary Care scheme.

Autism-specific early intervention
Autism-specific early intervention means early intervention designed specifically to treat children with ASD. In most states, several services offer this, including the state autism associations, as well as non-government organisations and private providers. Many of these organisations will be on the Early Intervention Service Provider Panel, although some might not be.

Some non-government organisations that offer autism-specific early intervention are part-funded by their state government. Some states provide funding packages to families to access therapy for their child through specific approved providers. Other providers are entirely private (that is, the user always bears the cost), but their services may attract rebates from private health insurance or Medicare.

If they can afford it, many families will ‘top up’ their $12 000 early intervention funding package by accessing extra services and support for their child, either through their chosen Panel provider, or through another service provider.

Generic early intervention
Generic early intervention describes services that are not autism-specific and that can be accessed by children with various delays, disorders and disabilities. Although many children with ASD do use generic services (especially before diagnosis), it is widely acknowledged that children with ASD tend to do better when given autism-specific early intervention.

 

Helping your child: child care and early learning

Spending part of the week in a child care or an early childhood education setting is generally recommended for young children with ASD. The right time to start depends on family circumstances. Finding the best place for your child might take time, so it’s always good to start learning about child care and education early.

  • 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.

Child care: long day care, family day care, in-home

Your child with ASD might already be attending child care – long day care in a child care centre, family day care in a carer’s home, or in-home care. Or you might be considering child care so that you can work, or as a way of assisting your child’s social and communication skills. Your early intervention provider should be able to advise you on the best local child care as well as preschools, kindergartens and pre-primary options. Ideally, your early intervention team and child care workers will work together, so that your child’s developmental goals are addressed in a coordinated way every day. This should help your child to ‘generalise’ skills – use and practise skills from the early intervention setting in the wider community.

The federal government’s Department of Education, Employment and Workplace Relations (DEEWR) runs the Inclusion Support Subsidy, which helps children with special needs integrate into child care.

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.

Early childhood education

Most children in Australia are funded for at least one year of early childhood education before they start school. Whether this is fully or partly funded, what it is called and where it takes place differs in each state and territory. These early education settings are generally administered and registered through state and territory departments of education. There are some early learning settings that are specific to children with special needs, and some are autism-specific. Children who attend these for part of the week will generally also go to a mainstream preschool. Some states provide funding to support children's integration into a mainstream class.

Early childhood education is highly recommended for young children with ASD. Your early intervention provider should be able to advise you on the best local options. Ideally, the early intervention team and preschool workers will work together, so that your child’s developmental goals are addressed in a coordinated way. This should help your child to ‘generalise’ skills – use and practise skills from the early intervention setting in the wider community.

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.

 

Helping your child: going to school

Families often say that it feels as if both parents and children are starting school – this might be especially true for families of a child with autism spectrum disorder (ASD). The benefits of being well informed about your options and prepared to speak up in your child’s interest can’t be understated.

  • 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

The transition to school is one that involves not only the child, but parents as well – especially when the child has ASD. To help their child make a successful transition, families can learn about school options and about how to be a good advocate for their child. One great way to find out about your options is to talk to families who have already made the transition to school.

Pre-school developmental assessment

A developmental assessment is often done in the year before a child starts compulsory schooling. This is a useful way of assessing how the child is going. It also helps the family, the early intervention team and the education system decide on the best school placement, as well as funding the child might gain if going to a mainstream school. The assistance of the child’s early intervention team is likely to be a key part of the family’s decision-making.

Transition to school

Transition to school involves helping children make a smooth start at school. Arrangements depend on your state or territory and also on your family and early intervention team. For example, transition could include visiting the school before term starts, training teachers, or using visual materials to help your child prepare for the school environment.

Positive Partnerships
Positive Partnerships is a program that aims to improve the educational outcomes of school-aged children with ASD. It is an information and training program designed for families and teachers of children with ASD, and is part of the federal government’s HCWA program. Two-day workshops are run for families, and longer training courses are held for teachers. Families can also complete online learning modules on the Positive Partnerships website.

Mainstream schools

Many children with ASD attend mainstream school – in fact, it’s believed that the majority do. You might hear the terms ‘integration’ or ‘inclusion’ used to describe this type of enrolment. Mainstream schools can be run by state education departments, Catholic education offices or private organisations. In most cases, students with ASD and their teachers are supported by a classroom aide for part of the school day. Visits from specialist autism or special needs teachers might also be available.

Satellite or support classes

Support or satellite classes are classes of 6-10 students with one teacher and usually a teacher’s aide. They operate within larger mainstream schools in some states and often (but not always) aim to slowly integrate children into the mainstream school population. ASD-specific satellite classes, run by the state education department or state autism association, might be available in some states. More common generic support or satellite classes usually have students with many different sorts of additional needs.

Special schools

The term ‘special school’ covers various education settings, which share some similarities. For example, teachers in special schools are specially trained to teach children with additional needs. Also, each child in a special school usually has a specialised program to address individual learning needs. This is called an Individualised Education Plan (IEP).

Autism-specific special schools
Some special schools are autism-specific – that is, all their students have ASD. These may be state-run (Victoria only) or run by state autism associations or other not-for-profit groups. Usually, class sizes are small, and special needs teachers are supported by classroom assistants. Students at autism-specific special schools generally have multiple additional needs and require an intensive level of support. Autism-specific special schools often aim to integrate some of their students into mainstream classes.

Generic special schools
Most special schools are generic – that is, they educate students with a wide range of additional needs. They might be run by state education departments, Catholic education offices or private organisations. Usually, class sizes are small, and special needs teachers are supported by classroom assistants. In some states, students can divide their week between a special school and a mainstream school. Students at special schools generally have multiple additional needs and require an intensive level of support. In a few cases, special schools offer students a boarding option.

 

Government funding and financial support

Getting an official diagnosis can open doors to financial support and government assistance.  The picture below shows the options you have to explore. This path also shows how to access the early intervention funding under the Helping Children with Autism (HCWA) package.

  • 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. 

ASD diagnosis

This is an official letter or set of assessment findings, which clearly state that your child has been diagnosed with ASD. This must be written by a professional such as a paediatrician, child psychiatrist, clinical psychologist or the head of an approved multidisciplinary assessment team. Ideally, it will include results of several standardised tests. It will give you a clear idea of your child’s developmental profile and the severity of the ASD symptoms at the time the tests were done. This profile can help you measure the impact of the interventions that you subsequently use.

Autism advisor

Each state and territory autism association has an autism advisor service funded by the federal government’s HCWA program. Autism advisors assist families and carers of children who are diagnosed with ASD by providing advice and information about early intervention and support services. Advisers link families to the Early Intervention Service Provider Panel and can assist eligible families to access the Australian Government funding for early intervention services.

Government-funded early intervention provider
Funding packages worth up to $12 000 can be used to help you ‘purchase’ early intervention services from the Early Intervention Service Provider Panel. These packages are for children aged 0-6 though autism advisors can approve access up to the child's seventh birthday. You can access this funding only through the autism advisor services. You do need a definite ASD diagnosis. Your autism advisor will be able to discuss the many options available. You can read about all the early intervention options on the Raising Children website.

If you live in an outer regional or remote area, you might be eligible to access an additional one-off payment of $2000 per child to cover additional expenses associated with accessing early intervention services. This payment is on top of the $12 000 funding package and any other services. Your autism advisor can tell you whether you are eligible.

Centrelink

Centrelink is an Australian Government statutory agency, delivering a range of Commonwealth services to the Australian community. These include payments to support families, some of which can be accessed by families of young children with an ASD diagnosis.

Carer Allowance
Carer Allowance (child) is a supplementary payment for parents or carers who provide daily care and attention for children with a disability or severe medical condition at home. It is paid fortnightly by Centrelink and is not means tested. The application form requires the carer and a medical professional to each complete a section, which can happen either before or after a child receives a formal diagnosis. Carer Allowance commences from the date the form is lodged, not the date of diagnosis, so it’s a good idea to apply as soon as possible.

Carer Payment
Carer Payment (child) is an income support payment for people who cannot support themselves through participation in the workforce while caring for a child with a profound disability and extremely high care needs. This payment is means tested.

Health Care Card
When a family receives the Carer Allowance (child) or Carer Payment (child), the child is also eligible for a Health Care Card. The card is usually sent to the child automatically once the Carer Allowance has been set up. The card entitles cardholders to reduced-cost medicines under the Pharmaceutical Benefits Scheme (PBS). Many GPs and some specialists bulk-bill card holders. Some cinemas, theatres, fun parks and major events allow card holders reduced entry fees, or give free entry to carers.

Commonwealth respite (Carelink)

Commonwealth respite (or Carelink) centres coordinate the National Respite for Carers Program (NCRP). This program supports people caring for someone with a disability in their home. Carelink provides information about services available in your local area, and helps carers to access respite.

Medicare funding

Medicare benefits apply to many services. Generally, you need a referral to make an appointment with a professional whose service is covered by Medicare – for example, child psychiatrists, paediatricians, clinical psychologists and other allied health providers.

Medicare benefits for early intervention treatment
These can be accessed for children aged up to 15, as long as diagnosis occurred before they were 13. Once they have a treatment plan, children can access 20 Medicare rebates for treatment from a psychologist, speech pathologist or occupational therapist. Treatments can be a session with one or a combination of these professionals. To be eligible for these rebates, children must first have an autism treatment and management plan from a child psychiatrist or paediatrician. The treatment must be provided to the child individually and in person and must last at least 30 minutes. As with all Medicare rebates, if the services you access are private, it’s likely the rebate will cover only part of the cost. Public services should be provided free when you present your Medicare card.

Medicare Safety Net
Medical costs can be very high, especially in the first years after diagnosis, or when a diagnosis is being sought. Families can register for the Medicare Safety Net. Under this program, Medicare pays higher benefits once a family reaches their Safety Net threshold. If your child has a Health Care Card, your Safety Net threshold is lowered, and you get higher benefits sooner.

Net Medical Expenses Tax Offset
Taxpayers can claim a tax rebate for a percentage of their family’s net medical expenses. Net medical expenses are the medical expenses you have paid, minus any refunds you got, or could get, from Medicare or a private health fund. You can claim a tax offset of 20% – 20 cents in the dollar – of your net medical expenses over $1500. There is no upper limit on the amount you can claim.

Included in the list of eligible medical expenses is ‘therapeutic treatment under the direction of a doctor’. This covers speech therapy, occupational therapy and some early intervention therapies (but not educational materials). You need to have an annual referral letter from your doctor indicating that the services are necessary.

Chronic Disease Management Medicare Rebates
GPs can refer patients with chronic conditions (a medical condition that has lasted or is likely to last longer than six months) and complex care needs to an allied health professional. Medicare provides rebates for up to five visits per calendar year to allied health services. These can be used in addition to the 20 Medicare payments for early intervention services.

The referrals can be made only if you have what used to be called a ‘care plan’ prepared by your GP. These are now called GP Management Plans (GPMP) if fewer than three health professionals are involved. They are called Team Care Arrangements (TCA) if more than three health professionals are involved. You will also need an EPC referral form prepared by your GP. This needs to have the name and contact details of the allied health professional on the form. This form is signed when you see the professional, and you take it to Medicare for your rebate. If your GP is not familiar with writing care plans, the GP can ask Medicare for more information. This is part of the federal government’s Better Access to Allied Mental Health Care initiative.

Mental Health Medicare Services
GPs who prepare a mental health care plan, as well as paediatricians and psychiatrists, can refer patients with assessed mental disorders to psychologists, clinical psychologists, social workers and occupational therapists, and Medicare will pay a rebate that will cover all or part of the cost of the visit. Medicare benefits are available for up to 12 services per year, and a course of treatment consists of up to six services with a review of the patient’s condition after the first six visits if necessary. ASD itself is not covered under Medicare mental health services. Anxiety, depression and other mental health conditions often present in children with ASD (and their families) are covered.

State or territory disability department funding

If your child or your family is eligible for support from your state or territory disability department, you might be able to access funding to buy specific items or services.

 

 

You and your family: help and support

Parenting a young child with autism spectrum disorder (ASD) is a challenge for any family. 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

Autism Advisor
Each state and territory autism association has an autism advisor service funded by the Helping Children with Autism program. Autism advisors assist families and carers of children aged 0-6 who are diagnosed with ASD. Advisors link families to the Early Intervention Service Provider Panel and advise on community services. Your autism advisor should be able to help you find other information and therapies.

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 and 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.