So you think you might need more support for your child. Maybe you have an autism diagnosis. How do you get an autism diagnosis and started on the NDIS?
I think there’s something different or tricky going on
The first step is often wondering if your child is normal. Checking for what’s in the range of age-appropriate development is one avenue. As a parent it’s often difficult to compare with other children and know if it’s normal. Sometimes teachers or early childhood educators can help if they see you child in comparison to others every day.
Maybe there’s a number of things at home that are tricky and aren’t getting easier, like eating, sleeping, outbursts, or routines.
At this stage, I think it’s helpful to start making a list. Think of all the things that are a little tricky and write them down in a list. Think about if you notice anything about
- ability to regulate emotions
- social skills – how many friends and how they interact
- sleeping difficulties – both going to sleep and staying asleep
- toileting issues or bedwetting
- eating issues or restrictive diets
- hearing concerns
- vision and reading
- communication – both verbal and non-verbal and any speech patterns
- routines, transitions, obsessive interests, ability to cope with change
To help you think about different aspects of life that may be of interest, we have a template below to support your list making. Combine your list with any concerns provided by teachers or other people in your child’s life.
Who do I talk to first about an autism diagnosis?
So you have a list of behaviours and concerns and think you need more support. First step is to see a GP and get a referral to a paediatrician.
What can be helpful is to have a record of how frequent concerning behaviours occur. For example, how often are there toileting accidents, how often is there an emotional meltdown, how often does school contact with concerns. Being able to pinpoint how long each episode lasts (for meltdowns or other behaviours like that), potential triggers, and how frequently it occurs can also be helpful. A paediatrician will probably be asking for this information in order to decide if it’s developmentally appropriate or not.
We have an easy tracker template for download below to support your documentation. Fill it out over a couple of weeks and take it along with you to your appointment. This will support your conversation, help the paediatrician, and make sure your don’t forget anything.
Benefits of a diagnosis
Many people don’t want a diagnosis. They don’t want a label or for their children to be treated differently. Some parents get a diagnosis, but don’t want their child or school to know. It can be daunting to start the process of a diagnosis, because there’s a sense of finality or fear of change that can come with a new identity
But there are many benefits to an autism diagnosis.
- having an official diagnosis opens up more support and therapy opportunities. You can seek funding support through the NDIS, and get a plan for therapy support for you and your child.
- with an identity, it helps therapists and schools (and you) to know a bit more about how to best cater for your child so they can have the most success.
- your child may have reduced anxiety, because now they can appreciate, celebrate and understand why things are difficult or why they feel different.
- it opens up opportunities to access support groups and meet people like you. You may make new friendships and have increased social opportunities.
- you can access autism-friendly events like movies, museum visits, and other locations that offer sensory-friendly visits.
- it helps you as a carer be more patient and accepting of difference – once you’ve processed the diagnosis through the seven stages of grief. It can show you a way forward, which can actually decrease the frustration you feel about why your child is not like others.
Ultimately, we did pursue a diagnosis for both our children. While it was tough at the time, the benefits in having a larger support network that understands us better outweigh any negatives in having “an identity”.
What happens next – diagnosis or not?
The paediatrician may refer you to other allied health experts. They can recommend that your GP provides you with a mental health treatment plan (to access psychology, occupational therapy or social workers) or other plan. These plans give Medicare-subsidised access to 6 sessions, then up to 20 sessions after review.
Alternatively, if you have evidence of developmental delay (even without a diagnosis), you may be able to access the NDIS. Early Intervention for children under 7 can give you funding to access supports and therapies. This may be limited to funding for in yearly review cycles, to see if early intervention can make a difference.
If you do proceed and get a diagnosis, you can Request Access to the NDIS. If your child is over 7 years of age, you will have to go straight to the NDIS and not through early intervention.
Resources to support your journey
Download the Brave Capybara Support Tracker Pack – with prompts for lists, and trackers for monitoring how frequent behaviours occur to help you decide if you should get a diagnosis.
Enter your email here to get an instant download of the Support Tracker Pack.
Conclusion: should I get an autism diagnosis?
If you are struggling with parenting, think your child is developing or behaving outside what’s considered neurotypical (or “normal”) or have a list of concerns from school or childcare, perhaps consider seeking an expert opinion.
While we think there are more benefits to proudly having an autism identity than not pursuing a diagnosis, it’s a tricky first step and can be difficult to process.
Even if you don’t have an official diagnosis, if there are concerns with developmental delays you can still access support. And if you have the slightest concerns, it can be in your best interests to see a paediatrician before your child turns 7 in order to access early intervention.
This is the first post in the Navigating the NDIS series.
Also see:
- Should I get a diagnosis? How to track behaviours and talk to professionals about a diagnosis.
- How to write NDIS goals. How to write goals that will meet your needs, and advocate for what you want in a review meeting.
- Things to buy with Core Support Funding. Items that can be helpful supports for meeting your NDIS goals.
- How to self-manage on the NDIS. How to find therapists, schedule appointments and manage your funding budget.