Help following a diagnosis

So, you’ve had a diagnosis of autism in the family. What next?

Getting a diagnosis can be a challenging and stressful time for families. It is only natural that you will have mixed emotions – relief at finally having a diagnosis, but perhaps uncertainty or even grief or fear as you start your journey with this knowledge.

It can be difficult, but it’s important to try and avoid feeling overwhelmed by a diagnosis, and to take ‘baby steps.’

Importantly, you will realise that you are not alone – and that there are thousands of other families all across the world that are also treading a similar path.

On a practical level, having a diagnosis can help link you in to a wide range of support and services to help you and your family. A diagnosis can also a positive step forward in you and your child receiving greater understanding from those around you.

While autism can be challenging, it is important to identify the things that you, or your child, has strengths and skills in.

A diagnosis of autism, may allow you to have a better understanding of your needs, or your child’s needs. Here’s some helpful information on how to maximise potential and direction on how to start organising appropriate supports.

Children: after an autism diagnosis

Once a diagnosis is made, you should receive a copy of your child’s assessment report.

A diagnosis can play an important role in helping and informing those around your child, including family members, health care professionals, educators, child care staff and sporting coaches. It can allow people in your child’s life to better understand your child, and provide you and others with the necessary strategies to support their needs, and access programs or therapy to develop skills in specific areas.

Your child’s assessment report may be used to plan a program that suits their unique and individual needs. This plan is often made in consultation with you and your child’s future service providers.

By looking at the impact of autism on your child’s functional skills, an assessment report can also be used by government agencies, schools, accommodation providers and other services to determine your child’s needs and possible eligibility for funding, or other supports.

Educate yourself about autism

Sometimes the more you know about autism, the better you can support your child – and the more empowered you will feel to make wise decisions and advocate for your child.

It is important to remember, that every child on the autism spectrum is different from each other. They will have their own strengths and skills, and their own challenges and struggles. It is important to keep this in mind when looking at the vast amount of information out there.

Some good places to find information include:

• This website
• Your state autism association website
• Information workshops offered in your local area
• Online training and workshops
• Autism conferences
• Books written by people on the autism spectrum
• Other books and resources
• Support groups – face-to-face and online
• Movies and DVD’s
• Research articles
• Speaking to other parents
• Speaking to other people on the spectrum

Have a look at what’s around and what will best suit you and your family in your journey of learning.

Remember, while there is lots of useful information, advice and strategies on autism, there is unfortunately a lot of inaccurate information and advice being provided and promises being made.

To determine if the information is credible, refer to evidence-based practices in strategies and practices. Also, keep in mind you do not need to learn everything straight away.

Learn more about what is available on our Support and Services pages, or our Resources section.

Support moving forward

A wide range of support, services and therapeutic programs are available for children and adults who are autistic and their families and supporters. Some are government funded, and some are on a private fee-for-service basis. Some of the support available includes:

• Information: online, workshops, trainings, conferences, books, support groups, information packs, meetings etc.
• Advocacy services: advocacy support groups, workshops, training, one-to-one advocacy services.
• Assessment services: occupational therapy, speech pathology, psychological, physiotherapy, behaviour.
• Early support services: early childhood partners, early intervention services, playgroups, preschools, autism specific early intervention programs/services.
• Learning and education support: academic tutoring services, in school support.
• Therapeutical services: occupational therapy, speech pathology, counselling, psychological, , physiotherapy, Art and Music therapy.
• Behavioural support: PBS support planning, ABA therapy, assessments, behaviour practitioners.
• Supported accommodation and care: short term accommodation, day options, school holiday programs.
• Groups: support, interest, social, recreational.

To learn more, go to our Support and services page.

Education and behaviour

A combination of educational and behavioural strategies that are highly structured and designed to meet the particular needs of each individual can be effective in supporting the needs of autistic people. Structured practice in the early years can support your child’s development.

There is a huge range of support and services, strategies and practices available to you. It is also worth doing your own research and discussing with a team around your child what options would suit you, and your child best.

When searching the internet for information on autism programs or therapies, be aware that not all information on the internet is reliable. Check with your doctor or professionals working with your child, and be wary of any website that claims a ‘cure’ for autism. It is a condition that span across a person’s life time.

Letting people know

Every family responds to a diagnosis of autism in their own way. Some families will want to share their news with others, while others will only want to tell people on a ‘need to know’ basis.

There is no right or wrong answer, and who you tell – or ultimately don’t tell – is your personal choice.

However, there are some considerations that families should take into account when making a decision whether to share a diagnosis. These include:

Your child.

One question parents sometimes battle with – particularly if their child is young – is at what stage they should share the diagnosis with them.

Some will want to talk about autism with their child from the get go, while others will hold off until their child (or others) start questioning their differences. Ultimately, the ‘if’, ‘how’ and ‘when’ is up to you. However, keep in mind that it can be empowering for a child to have a better understanding of themselves and how they view life and the world around them. It can also be valuable for a child to know that there are many other autistic people that may share common experiences out there.

Your child’s medical professionals.

It is important you tell your child’s GP and other health professionals that may be involved with your child if no one else. This will help them to monitor and support their developmental needs.

Your child’s school.

Telling your child’s school can often lead to a better understanding of your child and their needs in the school environment by their teacher and other support staff. Disclosure can ensure your child gets any additional support and any extra services that they may need. You have the right to request that only certain people in a school, or educational sector, are informed about your child’s diagnoses and you can request that your child’s peers are not informed about the diagnosis if desired.

The benefits of telling school

There may be some advantages in sharing your child’s diagnosis with your school. It is important to remember that while your child may have received a diagnosis of autism, every autistic child is different and has their own needs.

Schools will generally assess the needs of your child on an individual basis meaning that the below may be available to some students, but not for others.

In many instances it can be beneficial to provide a copy of the report from your child’s autism assessment to the school so they can use it to support in identifying your child’s skills and strengths, and areas that are difficult. Again, this is entirely up to you. Schools will often then provide information about the next steps involved which may include a meeting to discuss future support and planning to help your child reach their potential in the educational environment.

Some benefits of informing your child’s school, include:

• Your child can be encouraged in their areas of strength or interests.
• Your child’s teacher and their support staff may better understand how your child processes the world around them.
• A better understanding of your child’s behaviours – which may otherwise be thought of as naughtiness or laziness, rather than a lack of skills in social interaction, sensory processing, problems solving or organisation.
• Accommodations and adjustments may be made to support your child.
• The curriculum may be adapted to suit your child’s learning needs.
• Your child may be able to receive additional support to help them with academic, daily living and emotional goals.
• Accommodations may be provided to support your child’s wellbeing such as break times and opportunities to do alternative activities at recess and lunch.
• Considerations and supports in assessment and exams may also be available to some students.

Adults: after an autism diagnosis

If you have just been diagnosed as autistic as an adult, no doubt you will want to learn more about autism, how to access services and support, and perhaps join a group of some sort.

Post-diagnostic support can be important. Your assessing professional, GP or health professionals should be able to point you towards where a good place to start. For example, you might want to explore:

• A post diagnostic meeting or information session which can provide information about what autism is, supports and services and strategies and practices that may be available.
• Access training and workshops to learn more about autism and what it might mean for you.
• Access services such as counselling, psychologist or other professionals.
• Joining on-line support group or social group for autistic adults.
• Talk to other autistic adults and find out what it has meant for them.
• Seek employment support.
• Look at financial support options that you may be eligible for.

You can learn more at our Support and services page or visit our Resources section for local support service providers in your community.