When your child is diagnosed with autism spectrum disorder (ASD), you’ll discover that many professionals and service organisations can help you and your child. You’ll need to decide which ones are right for you. Your first step is learning about who does what and how the services system works.
Autism spectrum disorder service providers
The term service provider is used to describe the people and organisations that provide services and programs for children with autism spectrum disorder (ASD) and their families.
The people are professionals with qualifications in areas such as psychology, education, speech pathology or occupational therapy. They will also be experts in child development, especially developmental delays such as ASD.
The organisations that employ these professionals run a wide range of intervention, therapy and support services and programs. These organisations fall into the following categories:
state and federal government services and programs, which will usually be provided free of charge
not-for-profit (NFP) services and programs, which are mostly funded by government and might be free or partly subsidised
private services and programs, which might be partly funded or which you have to pay for in full.
Service provider approaches
Different service providers take different approaches. But almost all services and programs fall into one or more of the following categories.
Medical approaches focus on treating key symptoms of autism and managing any medication that children use. In older children and teenagers, this might include prescribing medication to help reduce the symptoms of anxiety.
Providers using this approach focus on teaching children new behaviour and skills by using specialised, structured techniques. Applied Behaviour Analysis is an example.
A provider with a developmental approach aims to help children to form positive, meaningful relationships with other people, focusing on teaching children social and communication skills – for example, Relationship Development Intervention.
If you use a provider with a therapy-based approach, you’ll find it provides a specific therapy that targets specific difficulties. For example, it might use occupational therapy to target fine motor difficulties, or speech therapy to develop a child’s communication skills.
Family-based providers emphasise the idea that family involvement in the therapy is central to meeting a child’s developmental needs. For example, a provider might offer parent training workshops to give you skills to help your child achieve therapy goals.
This category includes a broad range of non-traditional treatments, which come under the heading of complementary and alternative approaches.
Combined approaches bring together elements of behavioural and developmental approaches, as well as new knowledge about autism and development. The TEACCH approach is an example.
Other approaches includes interventions that sit outside the categories listed above – for example, music therapy.
Terminology: therapies or services?
Therapies (also called interventions) are the programs or sessions aimed at helping to promote your child’s development.
Services are the places and organisations that offer these therapies. A service might provide one therapy or several types.
You’ll also hear the terms specialist and generic being used.
Specialist means that the service or program specialises in supporting children with ASD and employs people who are experienced with ASD.
Generic means non-specialist providers of services to all children. These services or programs might or might not have some experience with ASD. For example, they can include child care and preschool programs. A larger generic service provider might have specialist ASD teams.
A child with ASD can go to either a specialist or generic service or program. In many cases, the child can go to both. Staff in a generic service or program will often liaise with ASD specialists and attend ASD training programs.
Video Disability services and support
This video is available in different languages
In this short video, find out how to get information about disability services and where to start. Disability experts discuss your funding options, how to find good service providers and the different types of respite care you can get. You’ll also hear from other parents about their experience of respite care and counselling.
Your decision about which services and programs to choose will depend on many things including cost, the options available in your area and your child’s particular needs. You can find out more about choosing a disability service provider
At first, you might feel overwhelmed by ASD information and options. Parents have said that it seems like a maze, or a complicated road map.
You might find there are particular steps you need to take to use the services you’ve chosen. For example, for some services you need a referral and/or diagnosis. For others, you don’t. Some services attract funding or rebates. Others don’t.
If your child wasn’t diagnosed until later childhood or adolescence, you might feel that you’ve missed out on crucial years of getting help for your child. But it’s never too late to start getting services, and there are options for older children and teenagers and their families.
It can help to ask key professionals in your child’s life about different services and how they might help your child. The team who diagnosed your child might have some suggestions about useful services. Your GP or paediatrician, or your child’s teacher, might also have some ideas.
Our Autism Services Pathfinder
can help you work your way through different service pathways. It can also help you find out as much as you can about a service provider before you contact it to have more detailed discussions.
In Australia, each state and territory has an autism association. These associations have lots of information about ASD and the service options in your state or territory. They’ll also be able to connect you with a range of parent support groups. Several autism associations are also service providers.
Under the government’s Helping Children with Autism (HCWA)
the state associations are the home of the HCWA autism advisors. If
your child is under seven and diagnosed with ASD, these advisors can
advise you and help you find early intervention services and government
Support at school
Your child might be able to get some extra support at school in the form of funding, or the school might be able to find speech therapists, psychologists or other professionals to work with your child at school. Your child might go to a specialist school for children with a range of disabilities, a school for children with ASD or a mainstream school. Some schools have special units or programs for children with disabilities or special learning needs.
Lots of families find that sharing the diagnosis with the school is a good starting point for getting extra support. Your child’s school might be asked to build specific therapy approaches into their program for your child. You might need to spend time working with your child’s school to get the best educational outcome for your child.
Getting answers, getting organised
Parents have found that two important skills they need are asking the right questions and organising all their information.
When you start exploring services for your child, it helps to ask as many questions as you can think of:
- Let the questions pour out – there’s no question that’s not worth asking.
- Write down questions as you think of them. Otherwise the good ones might slip away.
Information overload can easily happen, so it’s important to start organising your information as soon as possible. You’ll have information about your child, and will probably collect a lot of information about ASD and service providers.
Here are some tips for keeping it organised:
- There’ll be important information that you need to keep handy for future reference – assessment reports, school or program reports, application forms and details of appointments. A folder of some type is the most useful way to keep this information organised.
- You might also want to keep lists of terms, words and acronyms, websites and books that you’ve found useful. This type of information can be stored in a notebook or computer file.
- Printed information can be stored in many ways – computer files, written journals or diaries, desktop-type files, shoe boxes, bottom drawers. It doesn’t really matter, but deciding on an approach early will save you time and confusion later.
- When it comes to deciding what information to keep, be ruthless – you don’t want to build a whole library. Try to keep only what’s relevant to you and your situation.
What other parents say
Parents who have been on the journey through ASD services have found there are some things that really help.
Here are some of the things parents say:
- There is no one way to help your child with ASD. Spend time to find what is right for your child and family.
- Be prepared to change things along the way, as your child grows and develops and your preferences and service opportunities change.
- Be resilient and persevere. Keep trying and don’t let any setbacks get you down. Talking with family and friends is a great way to stay strong.
- Taking things a year at a time can help you stay grounded and relaxed when making decisions about the next stage in your child’s treatment.
- Some decisions will be just right – others might need to be changed. This is OK. While you’re discovering more about ASD, your child is changing and learning new skills too.
- ASD family support groups can be very helpful. They provide a chance to meet and form friendships with others in the same situation as you.
- Online forums are a great way to connect and share stories, advice and support. You can visit our online forum for parents of children with ASD to share information with other families.