15 May

2024

The diversity of autism families

If you’re not new to the autism community, you’ve probably heard the saying, ‘If you’ve met one person with autism, you’ve met one person with autism.’ But this statement can also apply to autism families; no two will look the same, have the same experiences or value the same things.

This week is National Families Week, an initiative run by Families Australia that aims to celebrate family diversity and connections. This theme is especially important for autism families, who should try to embrace individuality, prioritise social connections, and engage with the community in a meaningful way. In this article, we’ll explore the diversity of autism families and what their unique needs, strengths, and challenges might be. We’ll also share where families can access information, resources, and support services relevant to their situation.

Autistic parents and parents with disability

As adults, many individuals with autism or disabilities have families of their own. They may have had their disability since birth or acquired it throughout their lifetime. In the case of autism, an individual may have received an autism diagnosis at a young age or received a diagnosis later in life, often at the time that their own children are diagnosed.

Ensuring your needs are met at home, work, healthcare settings, and the community is a crucial first step. For example, asking for accommodations at work or seeking assistance with daily tasks and responsibilities from family, friends or support workers could make the role of parenting or caregiving much more manageable.

For autistic parents and parents with a disability, prioritising health and wellbeing is particularly important to ensure you can remain the best version of yourself, both as an individual and as a parent. If you are struggling with your health and well-being or simply want to improve in these areas, seeking external support might be worthwhile. You may be able to use your NDIS plan to fund the support you need, or you can pursue other funding options.

Forming connections with other autistic adults, whether they’re parents or not, can give access to stories, advice and relationships that are invaluable for feeling supported and connected to others. Even reading about the stories and experiences of other autism families can help. Mel Spencer OAM is the CEO of Different Journeys an autistic and ADHD parent of autistic children, who shared her parenting and self-care journey with us in this blog piece.

Autistic parents and parents with disabilities have the same rights to access, support and inclusion as everyone else. If you are experiencing exclusion, discrimination or harassment due to your disability, you have every right to speak up. Learn more about self-advocacy skills as well as what constitutes disability discrimination and how to seek formal support.

Blended families

Blended families are defined as two partners coming together with a child or children from a previous relationship. Blended families can combine families of different ages, cultural and linguistic backgrounds and values, which can be exciting and challenging.

When there is an autistic person or people in a blended family, there are usually some additional considerations that need to be made. For people on the autism spectrum, major life changes can take more time to adjust to and can be incredibly distressing without adequate preparation and support. The social and communication challenges many people with autism experience can also make navigating new relationships with step-parents, step-siblings and other new family members stressful.

In blended families, it’s important that all family members, regardless of their age or ability, feel heard and respected. Encouraging open and positive discussions regularly ensures wins are celebrated as they happen, and challenges are addressed before they develop into more serious issues. It can take time to understand different family members' communication styles and capabilities; allow yourself and them some grace and patience as you adjust to new routines, expectations and relationships.

Many blended families have co-parenting arrangements, meaning two parents who have separated or divorced continue to share the responsibility of raising the children they had together. Although navigating co-parenting with autistic family members can be challenging, it is possible with clear expectations and open and honest communication between all parties involved. For more information about navigating co-parenting with autistic children or as an autistic parent, you can read our guide here.

An often overlooked area of blended families is the needs and well-being of siblings. Actively considering their needs and wishes where appropriate is important for maintaining good mental health and a strong sense of self, as well as fostering a positive relationship with their new autistic sibling. CEO of Siblings Australia Dr Shannon Schedlich shares how she supports the autistic and neurotypical children in her blended family in this blog piece.

Single-parent families

Many autism families are also single-parent families; meaning that there is a sole parent raising one or more children. Often juggling work and other commitments alongside raising a child, single parents have a lot to juggle before taking the additional responsibilities of parenting an autistic child into account.

It’s crucial that single parents prioritise their health and well-being to be the best advocates for themselves and their families. This might involve outsourcing certain tasks, saying ‘no’ to events and activities that will contribute to burnout, and seeking external and professional support, even when things feel manageable.

Single parenting in an autism family can be both a challenging and rewarding experience. Ensuring you have a strong support network to celebrate the wins and share any struggles with is vital. There are some online groups for single parents of children with autism that you might find helpful to join but remember that connecting with people to discuss things outside of parenting is also important for maintaining your identity outside of parenthood.

Our co-parenting article contains information and advice from single parents, which you can read here. You can also refer to this fantastic compilation of self-care strategies and support services for sole parents created by mental health organisation ReachOut Australia.

‘Being a single mum of three neurodivergent children is fine, because it’s better than being with someone who isn’t supportive and who is destructive, so there is a lot of freedom in that. I’ve told my kids that we’re a team, but I’m also part of the team, so sometimes I’m going to have to lie down or have a gone day and not do certain things.’ – Jo Abi, Mother’s Day Panel 2023

Culturally and linguistically diverse (CALD) families

More than one-fifth of Australian families speak a language other than English at home, demonstrating how culturally and linguistically diverse our country is. The journey for CALD autism families in Australia can be both rewarding and challenging due to the accessibility barriers to accessing support and participating in the community.

In some cultures, disability can be a taboo subject, leading to significant stigma around autism and disclosing an autism diagnosis. This can cause autistic individuals and their families to feel unsupported by their families or communities. Sometimes, autism families may be excluded from certain cultural events or practices, which can contribute to social isolation and cause significant distress. Autism families who don’t have family or friends from within their culture living nearby can also experience significant loneliness.

Cultural and language barriers can sometimes make accessing support and advocating for one’s needs more difficult. For example, therapy services, schools and the NDIS can be challenging or even impossible to navigate for families who do not speak English. Some families may worry they will face stigma, discrimination or harassment around their cultural background when trying to engage with external support services.

Vasily and Margarita Shchegolev spoke to us last year about their experience as parents of Eddie, who was diagnosed with Level 3 Autism and Global Developmental Delay (GDD) at the age of two and a half. They discuss the influence of their cultural background on their awareness of autism and how they have accessed the NDIS, therapies and an accommodating school for Eddie in this blog piece.

For further support for CALD people in Australia, including migrants and refugees, you can refer to this list of services created by the Raising Children Network.

LGBTQIA+ families

LGBTQIA+ families, sometimes also known as ‘rainbow families,’ are families where one or more LGBTQIA+ parents raise children. This also includes blended families with one or more LGBTQIA+ parents. Some rainbow families may also consider surrogates or donors as part of their family.

There can be a lot of misconceptions about LGBTQIA+ families and children raised by LGBTQIA+ parents, despite research consistently proving that children from rainbow families have the same educational, social and emotional outcomes as children raised by heterosexual parents. These harmful stereotypes can impact how rainbow families are perceived and treated by educators, service providers, healthcare professionals and members of the community. This can create challenges for LGBTQIA+ families trying to find supportive service providers for an autistic family member, as they may feel they have to conceal their identity or their family’s to be treated with dignity and respect.

Within the queer community, autism families can face also face barriers to inclusion. For example, if a queer event is not accessible to an autistic person, the entire family usually has to miss out, reducing their opportunities for social interaction and inclusion.

The Raising Children Network has created a free guide to empower LGBTQIA+ families who receive support from the NDIS. This series of articles and videos explores a range of topics, including choosing supportive service providers, advocating for your family within the scheme and building positive relationships with providers who work within your home. These guides include firsthand perspectives and advice from LGBTQIA+ parents/carers of children with disability, as well as LGBTQIA+ parents/carers with disabilities themselves.

LGBTQIA+ individuals and rainbow families can also refer to these lists of support services from Raising Children Network and ReachOut Australia.

First Nations families

Research has identified that autism is underdiagnosed and, therefore, under-supported among First Nations people, and there are a variety of factors that contribute to this. Many Indigenous communities do not have access to accessible information about autism, making identifying the signs and seeking support challenging. In some communities, there may also be stigma about autism and disability more broadly, which can isolate autistic First Nations people or discourage them from discussing autism or seeking support.

Many First Nations individuals and communities have had negative experiences within systems critical to the development and well-being of people with autism, including health, education and the justice system. This can make First Nations families reluctant to seek a diagnosis or pursue therapies and other services. A lack of culturally safe therapies and supports for those First Nations people with a diagnosis can mean individuals and families don’t receive the relevant and timely support they need.

Positive Partnerships has a range of resources for First Nations autistic people and their families, including:

Information about what autism is and what support is available
Books and videos to help parents and educators teach children about autism
Interviews with First Nations autism families to highlight their experiences
Interactive resources to assist in communicating an autistic child’s support needs, encouraging their inclusion and participation at home, school and in the community
A podcast featuring discussions with parents, carers and service providers about autism in Aboriginal communities

You can access these free resources here.

Aspect also offers a free guide to autism support for First Nations families. It contains a brief introduction to the medical professionals who can support autistic children, the role of the NDIS, and what an effective and supportive therapy service looks like.

For First Nations people who are autistic or are parents/carers of autistic children, the Facebook groups ‘Autism Aboriginal Way’ and ‘Aboriginal Autism Disability Support’ are great places to connect with other First Nations people in the autism community.

Your next steps

Every autism family is unique and has individual needs, challenges, goals and expectations that will change and evolve as their circumstances do. Regardless of what your family requires, looks like and values, you have the right to be heard, understood and respected by other families, service providers, educators and the wider community.

Seeking out community support can help reduce isolation for autism families, enabling them to ask for advice, share their experiences and build positive and meaningful relationships with other families who can empathise with their situation. Whether this is through in-person groups or online, connecting with other families could help you form friendships that will last a very long time.

Interacting with individuals or families like yours can be incredibly exciting, but it’s important to keep your safety and well-being front of mind. Be conscious of the photos, videos or information you share online to ensure they don’t compromise the safety or dignity of anyone in your family. And remember, if an individual or group makes you feel uncomfortable, unsupported or unwelcome, you have every right to speak up for yourself or leave the group. You don’t owe anyone your time or energy who is not willing to respect you or your family.

For more free, evidence-based information and support for autism families, you can visit the links below: