A guide to discussing autism

Receiving an autism diagnosis can be overwhelming, whether it’s for you, your child, or someone else you know. It can be difficult to talk about it with others, as you may feel anxious about their reactions or unsure how to advocate for yourself or your child’s needs. However, with self-awareness and practice, you can gain confidence in discussing autism and advocating for what you and your family require. Over time, it can become easier to navigate these conversations.

In this post, we’ll share how you can approach disclosing an autism diagnosis in different contexts, depending on whether it’s your own diagnosis or that of your child or someone else. We’ll share tips from autistic adults and parents/carers of autistic children, as well as where you can access further information and support.

• Pros and cons of disclosure
• A parent perspective
• An autistic perspective
• Tips for disclosure in different contexts
• Further support

Pros and cons of disclosure

Before we launch into strategies for discussing an autism diagnosis, we thought we’d start this article with some quick yet important reminders for autistic individuals and their loved ones around disclosure.

In most contexts, autistic individuals and their loved ones can choose whether or not to disclose an autism diagnosis to other people. Whether this is in a school or workplace setting, out in the community or when speaking to family and friends, this decision is highly personal and motivated by a range of factors. You aren’t obliged to disclose you or your child’s diagnosis, and you aren’t obliged to justify your decision to disclose either.

There can be a range of benefits to disclosing you or your child’s autism diagnosis with others. You might gain access to support services or be able to request reasonable adjustments/accommodations at school or work. Your relationships with others might improve as they can better understand you and your family. You might also form connections with other autistic individuals or autism families, helping you to understand yourself better while finding your tribe.   

There are also very valid reasons why a person may decide not to disclose their autism diagnosis or their child’s. You might believe the news won’t be received well or will cause you or your child to miss out on opportunities or be treated negatively. There might not be a need for you or your child to access accommodations or support services. Or, being autistic might have no relevance to the situation you or your child is in.

Deciding whether or not to disclose an autism diagnosis depends greatly on the situation and your own personal boundaries and preferences. Regardless of the decision you make, it should be respected by those around you.

A parent perspective

For parents and carers of children on the autism spectrum, discussing your child’s diagnosis often becomes easier over time. As your knowledge of autism and your child’s individual strengths and challenges grows, so too will your confidence in speaking about autism and advocating for your child and family’s needs.

Nell Laime, mum of Mia, shares her perspective on discussing autism:

What advice do you wish you were given about disclosure when you received your child's autism diagnosis?

When we first received Mia’s diagnosis at 18 months old, we were so worried about her future and what this meant for her. I recall feeling an overwhelming feeling of the unknown ahead and how I would navigate what was needed to be Mia’s advocate and voice. I remember thinking where do I start? I wish I’d been given advice at the time that it would all sort itself out with time. Whilst we definitely have our challenges, we wouldn’t change Mia for the world. She has such a refreshing perception of the world and teaches us new things all the time.

What advice have you given to your child around disclosing their own diagnosis?

I thought the best person to ask this question is Mia herself. So when responding, I asked her what advice I have given her? She said ‘to be herself always and have fun’. I love this response because it is fundamental advice that could relate to anyone. We have encouraged Mia to embrace her diagnosis and be proud of her qualities (or superpowers as we call them). Mia is also involved with inclusive All Ability sport groups (Football4All, CheerAbility and DanceAbility) which have been amazing for her confidence.

How can parents of autistic children build their knowledge and confidence when it comes to discussing autism?

As parents of an autistic child, we built our knowledge by attending virtual information sessions and regularly connecting with Mia’s therapy providers to understand what was specifically required for Mia and her programs. I also found talking to other parents with children who have autism helped my confidence knowing we weren’t alone on the autism journey. I often remind myself to ‘Embrace the wins and learn from the challenges’.

How can parents of autistic children look after their own well-being and that of their family when discussing autism with others?

Exhaustion and burnout is real for parents of children with autism. In the early years we were so focussed on Mia’s needs and helping her older sister, we realised we had been neglecting our own well-being. We started to allocate time for us to do what it is that ‘fills our cup’. My husband now enjoys coaching soccer and an early morning swim, and I love a yoga class or meeting up with a friend.

An autistic perspective

Autistic individuals often find that their confidence when discussing their diagnosis with others also improves over time. There are a range of factors that can influence an autistic adult’s capacity to discuss autism, including their support needs, awareness of autism, how recent their diagnosis was and whether they have access to support services that foster their self-advocacy skills.

Jackson Trout shares his thoughts as an adult on the autism spectrum:

What advice do you wish you were given about discussing autism when you first learned that you were autistic?

I would have told myself that when discussing my diagnosis to explain to others, who were unaware, that if I came off as rude or inconsiderate that I’m not trying to be. That I’m not trying to be rude, I’m just not fully aware of myself and I can’t quite ‘read the room,’ per se.

What is some advice you have for discussing autism in the workplace?

When speaking about possible accommodations for autistic employees to thrive and reach their full potential in the workplace, speak of them in terms of “principles” rather than “rules.” A rule says “you must do this” while a principle says “this works.”

How can autistic individuals build their knowledge and confidence when it comes to discussing autism?

They can build their knowledge by reading all the most relevant, accurate and up-to-date literature there is and try to not fall down rabbit holes of bad misinformation.

How can autistic individuals look after their own well-being when discussing autism with others?

Don’t be nervous and speak truthfully. Remember; It’s not illegal to be autistic and you’re not in trouble.

Tips for disclosure in different contexts

How an autism diagnosis is disclosed can depend greatly on the situation. Whether it’s a school, a workplace, a healthcare setting or a family gathering, there are a variety of different ways discussing autism can be approached.

Family, friends and partners

Depending on your family dynamic or the nature of your relationship with your partner and friends, telling those close to us about an autism diagnosis can sometimes be the most nerve-wracking. We often worry more about what our loved ones will think or say when we have big news to share with them – this is completely normal.

Discussing autism at a time and place where you and the other person are most comfortable can help alleviate your anxiety. You don’t have to set aside hours to have the discussion, but bringing it up at a time where neither of you are pre-occupied with other things or could be interrupted can help.

Having information about autism that is accessible to your loved ones can help them understand you or your child’s needs and experience. Autism: What Next? has lots of information and resources for those who are new to autism. Even referencing film or television characters with autism whose experiences you or your child relates to can be a helpful way to break the ice.  

Sometimes, our loved ones might not respond in a supportive way, which can be incredibly hurtful. It’s important to acknowledge, at least to yourself, if you feel hurt that their response isn’t what you hoped it would be. If you feel confident and able to do so, you should tell the person that you feel hurt by their reaction and explain why.

Although it is upsetting when people don’t react to an autism diagnosis in the way we hoped they would, that person might not have a negative perception of autism forever. Through learning more about autism and spending more time with you or your child, unhelpful attitudes and stigmas can change. Allowing people to ask questions and share their points of view with you (in a respectful way) can help you identify misconceptions the person may have and provide them with reliable information and your own perspectives.

In the meantime, it’s vital to find or spend time with like-minded and supportive people who understand you and your family and can support you. Whether this is through online groups or catching up with people in person, staying connected with other people supports your confidence and self-esteem and can prevent turning to unhealthy coping strategies or developing mental health challenges.

Schools 

Disclosure at school can take a variety of different forms. Perhaps your child is starting school soon and you’re looking to find a perfect fit. Or, perhaps your child has received their diagnosis while at school and you’re in the process of seeking accommodations. Whether the diagnosis is recent or not, disclosing it to your child’s school can help relevant staff provide the support needed for your child’s success and meaningful inclusion.

Communicating with your child’s school doesn’t end once the diagnosis is disclosed; a child’s family and school should be discussing the child’s progress regularly to foster their learning and development and address any issues proactively. From more formal processes such as IEPs to updates via email or phone, developing and maintaining a positive relationship with your child’s school is in everyone’s best interests. 

Workplace

It’s crucial to remember that disclosure in a workplace setting is entirely a personal choice. You are not under any obligation to disclose your diagnosis to your employer unless your autism impacts your ability to perform the ‘inherent requirements’ of your job (i.e., the key responsibilities). However, disclosing a diagnosis can help you access support to perform better in your role and navigate the workplace with less challenge and anxiety.

If you disclose an autism diagnosis to an employer, they are legally required to consider if accommodations would improve your performance and participation. Adjustments should always be made in consultation with you; having an idea of what accommodations could help you can make these discussions more productive (e.g., having your desk in a quieter part of the office, working flexible hours to avoid becoming dysregulated at peak hour).

For more information and support, you can visit the ‘Workplace’ section of ‘Autism: What Next?’

In the community

Aside from the people we see regularly, there are many other places and situations where it may be helpful or necessary to share that you or your loved one is autistic. From medical settings to staff on public transport, it can be helpful to disclose you or your child’s diagnosis if it helps you to access the support you need.

The Hidden Disabilities Sunflower Lanyard is a discrete way for people with disability to indicate they may require additional support in public spaces. They can be worn on public transport, at special events or in crowded areas such as shopping centres. Many staff in these areas are trained to assist people wearing these lanyards, which can be ordered from the Hidden Disabilities Sunflower website and at some in-person locations.

Disclosing your autism diagnosis or your child’s in healthcare, community and other settings should enable you to access support, not be treated negatively or experience discrimination. If you believe that you or your autistic child has been discriminated against, you can and should speak up. You can visit the Australian Human Rights Commission website to determine what constitutes disability discrimination and how you can access support.

Your next steps

Discussing autism can be easier in some situations than others, and advocating for you or your child’s wants and needs takes time and practice. By understanding more about autism and your needs and wishes, you can develop your confidence and form positive relationships at school, work and with your loved ones.

For more information about autism and supporting yourself and others, you can visit the following links:

• ‍Supporting you and your family‍
• A guide to self-care for caregivers‍
• Managing your new diagnosis (adults)