We’ve just received a diagnosis – what now?

Being handed an Autism diagnosis can be scary – no matter how long the path to diagnosis or how familiar you are with the Spectrum. Many parents share how they were left with no idea of what to do next, and it can take a while to get your head around what your role actually is and how to access the services you need. These are some suggestions to help get you started – they may not all apply to you, and you will probably find other things to add to the list. But hopefully it will take some of the headache out of working out what to do next, and get things moving for you.

Apply for Carer’s Allowance or Carer’s Payment from Centrelink. 

Centrelink will be able to help you work out which you will qualify for. Or apply for both and see how you go. You will also receive a Health Care Card for the person with a diagnosis.

You will need to take the paperwork to your paediatrician for them to fill in.

Request the paperwork as soon as possible, as payments will be backdated to the date of the request. You can request either over the phone or in person.

If your child is 0-6 years old: Call the Autism Advisor Program and apply for funding.

This is a fantastic service – you can ask them ANYTHING autism related.

From their website:

“The NSW Autism Advisor Program assist families to take their next step by providing information, access to funding and support to make their own decisions.

The Autism Advisor Program assists families and carers of children aged 0 to 6 years, who are diagnosed with an autism spectrum disorder to:

  • Understand more about Autism Spectrum Disorders (ASD)
  • Access up to $12,000 from the government to pay for therapy for your child
  • Find out how to use the funding to help your child
  • Find out about professionals who can help your child
  • Find information that you can use to help your child
  • Find information about where further support is available
  • Make your own decisions on the best way to support your child and family.”

This is how you apply for the Helping Children with Autism fundingThis funding can be used for a range of early intervention services and resources either up to the value of $12 000 ($6 000 per financial year) or their 7th birthday, whichever comes first. It can take a while to come through so apply for it as soon as possible.

Call them on 1300 978 611.

Arm yourself with as much information as possible

It is very likely that you are fairly overwhelmed at this point and know very little about Autism. The good news is there are a lot of ways that you can access more information about autism so you can start to get your head around exactly what it is and how to start moving forward. Here are a few of the options available:

– Attend an Early Days Workshop (run by Aspect). These workshops are designed to provide a good overview of autism, and they are free.  To see exactly what is covered in the workshop click here, and to see when the next local workshop is running, click here.  (These workshops are for parents of children aged 0-6 years).

– Register for a Positive Partnerships Workshop. These workshops are invaluable for not only learning about your child’s diagnosis, but also equipping you to be a proactive advocate for them, as well as connect with other local parents of ASD kids. Many parents complete this course every year to refresh their knowledge and reinvigorate them to better tackle the battles that are unique to an ASD diagnosis. Often there are also granparents, aunties, uncles or even family friends who attend – it’s open to anyone who wants to be better equipped to help a child with autism in their life. The website is also a great resource and you can complete the online modules to help you get your head around what this diagnosis actually means. Both the workshops and access to the website is free.

Work out what therapies you want to access.

This can be worked out in a number of ways, and will depend on the assessment process you went through. Any diagnostic reports or assessments are a great place to start – CATS, occupational therapy, speech therapy, psychologists, even information provided by your child’s school or preschool. If you received a diagnosis without having assessments, it is worthwhile getting an OT or Speech assessment done to pinpoint what areas they need to work on. Once you have this information, write a list of what you want worked on and then prioritise. This will be an ongoing process, and your priorities will change as they improve in certain areas or new concerns come up or you need to transition them to something like school.

The Raising Children Network has a great overview of therapy options. It’s worthwhile spending a bit of time on their website to familiarise yourself with not only what is available, but the different approaches available. Here is just some of the information available:

The good news is that time spent at preschool and things that you do at home count as therapy as well – you might be doing a lot of things right already, or just need to tweak things a little bit to help them build up those skills.

If you are really struggling at home you can organise a home visit through the Aspect Building Blocks home visit program. They can provide therapy within the home as well as help you develop strategies to use to make every day life easier.

Don’t forget to look at group therapies (which are great for learning skills contextually), assisted playgroups or autism specific programs. There are a lot of options available.

There are often waiting lists for some therapies, particularly if they are through community centres or are very popular. Try to think about what you may need in future as well as now so that you can put your child’s name down on any waiting lists.

Still feel completely lost and confused?

Don’t worry, you are not alone! There are services that you can contact that will help you get your head around what you need to do.

Autism Advisory & Support Service: “The Autism Advisory and Support Service (AASS) provides a range of services to support, advocate, help, educate and guide families who have a family member with Autism as well as the greater community.” They are based at Liverpool and offer a range of services, including a 24 hour  Autism hotline: 1300 222 777.

Autism Advisor Program (see above)

– To see what advocacy services are available, see our directory here

Don’t forget to look after you!

Remember how you always put the oxygen mask on yourself before helping your child put on theirs if the plane is going down? If you don’t look after yourself you will struggle to be the best carer that you can be. This autism journey is tough and some days are harder than others. One of the hardest things can be the lack of understanding from others who aren’t on the journey also, even if they are well meaning.

There are many ways to connect with other ASD parents through facebook groups or playgroups or social groups. They can be a great source of support and experience.

Many parents with children on the spectrum find that they benefit from speaking to professionals (counsellors, psychologists or support groups). Your GP can help you find the right person. Remember, asking for help is a sign of strength, not weakness.

Just trying to find some time for yourself can make a big difference too (as hard as that can be). Even just half an hour to go for a walk or ten minutes to have a coffee in peace can make a huge difference. If you can find a babysitter and head out for a couple of hours, even better!

It’s important that you don’t think that you have to do this on your own. If there are people who offer to help or you can ask, use them!


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