Navigating family and autism

The journey following an autism diagnosis as an adult often has effects on relationships and family dynamics. 

It's a time when understanding, patience, and communication from the autistic adult and their family are more important than ever. Due to a lack of awareness, family members may have misconceptions about autism, which can cause them to make hurtful assumptions or comments. It's important to remember that people can become more informed and understanding through education, time, and patience.

Telling family about your autism diagnosis

Family reactions to your new diagnosis can vary widely, often influenced by personal beliefs, previous experiences, and the level of understanding of autism. For some, the diagnosis might be met with denial or discomfort, particularly if they have a limited understanding of autism or have been exposed to misinformation. This can be especially challenging when the response comes from close family members whose support is most needed and valued.

It's not unusual for family members to initially deny the diagnosis. They might have difficulty reconciling the new information with their existing perceptions of you. Without a clear understanding of autism, some family members might say things that feel invalidating, such as “You don’t look autistic” or “We know you best, so the diagnosis doesn’t change anything.” Some people might feel uncomfortable or fearful about discussing autism due to a lack of knowledge or stigma.

If you decide to share your diagnosis with family members, it's essential to approach the conversation feeling prepared and confident. Here are some strategies to help:

Provide accessible information

Think of information about autism in adults that you can recommend to family members who may need to learn more. This will give your family a clearer understanding of the diagnosis and counter any misconceptions they may have. Autism: What Next? is a free digital toolkit designed for anyone learning more about autism. 

Use examples

Referencing well-known autistic individuals can serve as an icebreaker and illustrate how their experiences relate to yours. This can help normalise the conversation and reduce family members' discomfort.

Express your feelings

This can be an emotional time for your family but also an emotional time for you. Remember that your thoughts, feelings and perspectives should be heard and respected. If someone says or does something that hurts your feelings, calmly and politely tell them and explain why. 

Sometimes, having someone you trust be present during this conversation can be helpful. They can reduce your anxiety, help you express your thoughts and feelings, and answer any questions your family might have if you are feeling uncomfortable or overwhelmed.  

If you struggle to remain calm during this conversation, take a break and discuss it at another time. Don’t be hard on yourself if the conversation doesn’t go as planned; advocating for yourself and communicating confidently isn’t a skill you will develop overnight. 

Many autistic adults receive support from professionals, such as a psychologist, after their diagnosis. It might help a family member who wants to learn more about autism or is struggling to understand the diagnosis to attend one of your sessions. This allows their questions to be answered by a professional and can take pressure off you if you find answering questions about autism overwhelming. 

Allow time for adjustment

Give your family members time to learn and adapt. Understanding autism is a process; their support will usually grow as they become more informed. Clear communication can encourage understanding and empathy on both sides. 

Sometimes, particularly if the conversation does not go well, you may need to take a break or revisit it at another time. This is perfectly normal; remember, your wellbeing comes first.

Addressing misconceptions 

One of the most significant challenges post-diagnosis is addressing misconceptions about autism. Your family may have misconceptions about what autism is and what autistic people are capable of doing, which can create conflict and strain in your relationship. Educating family members encourages them to be more empathetic and see autism not as a label or a deficit but as a part of who you are. 

Here are some common misconceptions you might encounter from family members:

Autism is visible

Many people believe that autism has a specific ‘look.’ It's important to explain that autism is an invisible disability and that people can be autistic regardless of their gender, background or physical appearance. Remind them that autism is a spectrum and that every autistic person is different. 

Diagnosis changes everything

Some might think that a diagnosis completely changes who you are. Remind them that the diagnosis simply explains why you may do or see things a certain way. An autism diagnosis can make it easier for some people to access support for navigating daily life, for example, through the NDIS. This might be something you would like to explain, too. 

While autism has some challenges, it also includes unique strengths and perspectives. Highlighting these can help shift the focus from limitations to abilities. 

Building positive relationships

Building and maintaining healthy relationships post-diagnosis with your family involves ongoing communication, education, and mutual support. Here are some long-term strategies to consider:

Regular check-ins

Continue to have open conversations with family members about feelings and concerns surrounding autism. An open line of communication can prevent tension in a relationship from escalating and create mutual understanding. 

Continual learning

Encourage your family to continue learning about autism. This could be through websites, books or movies. As understanding grows, so does empathy and support.

Celebrate strengths

Focus on autism's strengths and unique perspectives and encourage your family members to do the same. A strength-based approach to autism is important for building a strong sense of self. 

Seek support

Misunderstandings or conflicts impact all relationships. Although this is completely normal, it can still be very confronting when we experience it. External support can help us and those involved find solutions to miscommunication or conflict in a safe and respectful way. Remember, seeking support will only benefit you and demonstrate that you care about the relationship working well. 

Family counselling can be a great source of support for families where someone has recently been diagnosed with autism. There are providers in different states and territories which offer both face-to-face and online services. Relationships Australia provides family counselling across the country and gives a good introduction as to what family counselling is to help you determine whether it is a good fit for your family.

Supportive relationships outside of your family

While having support from family is important, it’s also important to have supportive people in other areas of your life. This is particularly vital if your family are not initially accepting or supportive of your autism diagnosis. Whether this is an autism-specific support group, another group of friends or an online space where you feel comfortable being yourself, these support networks can provide a sense of belonging and a safe space to share your experiences and gain advice. 

Joining a local or online support group can connect you with others who share similar experiences and provide a supportive community. Websites, books, and articles about autism can offer valuable information and help you and your family understand the nuances of the condition.

Looking after yourself

Receiving an autism diagnosis as an adult can bring up a range of emotions, from relief and validation to frustration and sadness. It's normal to feel a mix of these emotions, and it's important to acknowledge them while prioritising looking after yourself.

Be kind to yourself and recognise that feeling overwhelmed is okay; give yourself permission to take things one step at a time. Mindfulness and relaxation techniques can help manage stress and improve emotional well-being.

Consider seeking support from a therapist or counsellor who specialises in autism. They can provide strategies for coping with the emotional aspects of the diagnosis. Professional support can be beneficial for navigating the emotional aspects of an autism diagnosis, both for you and your family members.