Perhaps that news has come as a shock to you, or maybe you’ve had a hunch for some time now.
It’s also possible you’re here having known about your child’s Autistic identity for some time.
Or maybe you yourself are Autistic and so your understanding of your child’s Autistic identity is shaped by your own self-knowledge and experiences.
Whether you’re new to Autism, or have been walking the journey for a while, we want to help and support you.
Research tells us that being a parent of an Autistic child can be challenging, regardless of whether we are an Autistic parent or not, and whether we are new to Autism… or not. These challenges don’t necessarily arise because our child is Autistic, but because we have to parent our Autistic child within systems, like the education system, that are not designed for Autistic people. We also know that parents of Autistic children can find extraordinary joy, satisfaction, and growth in parenting their Autistic children. For an Autistic child, their parents are often their “safe” people (the people they trust to know and meet their needs), and the people with whom they share the deepest and most abiding connection.
That doesn’t mean that parenting an Autistic child is without challenges. Balancing the needs of everyone in our family, including our own, can be a real juggling act, and attending to our own self-care and needs might seem like a distant dream. Many times, we can feel helpless, either in not being able to move systems that refuse to support our children, or in not knowing how best to support them. And for many of us, there is an increased mental load in being an advocate in the many different environments in which our Autistic child exists, and in our efforts to parent consciously with understanding, respect, and love.
Sometimes, it can feel isolating to be a parent of an Autistic child, like you are alone on a journey that no one else can really understand. Whilst no one walks your unique path, with the exact complexities of your life, please know that you are not alone. There are many, many other parents from whom you can learn, and on whom you can lean, to support you in your parenting journey.
Let’s start with a question for you to consider… where has your knowledge about Autism come from? Chances are that your ideas about Autism have come from many sources, including diagnosticians, therapists, mainstream media, pop culture, social media, to name but a few. One of the key elements that tends to be missing from these sources of knowledge is input from Autistic people themselves. Autistic adults used to be Autistic children.
So, one of our primary tasks as a parent of an Autistic child is to learn about Autism from Autistic people – what it is, how it presents in your child, and how you can help your child to recognise their unique strengths and navigate the challenges that they may face.
We have many workshops, courses, free articles and resources from which you can learn from Autistic people and from other parents. You might like to start by learning more about Autism generally, or you might like to read some articles about specific elements of relevance to your child, such as sensory, social, or communication differences.
The more you learn, the more empowered you will be to make informed decisions, educate others and advocate for your child and your family.
Please keep in mind, as you take on this task, that you cannot possibly learn everything all at once. Learning is a lifelong journey! As you learn more – and as your child grows and matures and is better able to communicate their needs to you – you will become more confident supporting their Autistic needs, and navigating thief Autistic differences within a non-autistic world.
If your child has been recently diagnosed, it can take time to process. Very often, you may be trying to parent and understand a neurodivergence that you don’t know much about simultaneously. And trying to find new ways to support everyone in your family – including you –might seem unattainable right now.
However you’re feeling in this moment, it’s important to remember that your child is the same person they have always been. Your Autistic child was born Autistic, so you’ve been parenting an Autistic child since the day they were born, even if you didn’t know it.
So, in some ways, nothing has changed – you now just have a new insight to help you better assist your child to navigate the world around them, and for you and them to understand what makes them the wonderfully unique person that they are.
Like many parents, you might be feeling anxious, lost, overwhelmed, or just unsure where to start or what to do next in these early days and months. Let us reassure you that you’re doing just fine! You’re here, you’re researching, you’re wanting to learn more… and that makes you a terrific parent, and one that will be instrumental in helping your child to understand their Autistic identity.
Maya Angelou once said, that we “do the best you can until you know better. Then when you know better, do better”. As parents, wherever we are on our parenting journey and whoever our children are, we make the best decisions we can, with the information we have, and with our children’s best interests at heart. But, when it comes to our child’s Autistic identity, it’s important that we educate ourselves about Autism so that we do know better, and so that we can do better – for our child, our family, and ourselves. This will build the foundation for us to move forward with positivity, hope and optimism.
Most parents of Autistic children – regardless of your child’s age, or how long you’ve known they’re Autistic – will be thrust into the role of “advocate” sooner or later. In fact, advocating for an Autistic child is often a significant burden on parental mental health, especially when the systems within which you’re advocating are just not designed with Autistic needs in mind, or may not understand Autism adequately.
As the parent of an Autistic child, you will deal with many different systems on your child’s behalf or in support of them. This includes schools, educational departments, doctors or medical contexts, therapists, community groups, workplaces, and funding and support bodies. As your child’s advocate, remember that (apart from your child themselves), you know your child best. You are the “natural authority” in your child.
As an advocate, you can draw on your own knowledge, Autistic lived experience, research, your broader support team, and your knowledge of your child’s rights as a disabled person.
In most countries, Autism is defined as a disability and your child will thus be protected by the relevant disability discrimination legislation in your country. In Australia, Autistic people are protected by the United Nations Convention on the Rights of Persons with Disabilities (or UNCRPD), the Disability Discrimination Act (or DDA), and (if they are in education) the Disability Standards for Education. It’s worth reading these documents, so that you understand what your child has a legal right to expect.
Your child is likely to realise that they are different from their peers, and many children will be trying to make sense of why. Without some insight into their neurology, children can wrongly internalise the understanding that their difference is a character flaw or something “wrong” with them. Research has shown that understanding that you are Autistic younger in life can results in better wellbeing as an adult.
Also, once your child knows that they are Autistic, it allows them to access the support and connection of the Autistic community. There are both formal supports and informal peer groups as well as peer mentoring available.
Need some help on how to talk to your child about it? Please see the video below and this associated tip sheet.
It’s common for Autistic people to have deep passions, sometimes called special interests (or the more pathologising variations being “obsessions” or “restricted interests”, which we do not endorse using). Passions are a source of great joy, relaxation and contentment to Autistic people and can develop into areas of deep expertise and competency. These passions might change over the course of an Autistic person’s life or they might be lifelong.
We know that passions are important to Autistic wellbeing, so we encourage you to let your child immerse themselves in their passion.
More importantly, we encourage you to join them in learning about that passion or engaging in it – this is a wonderful way of connecting with your child, building your relationship, and finding joy in parenting.
Please see more on this topic in our article on why passions are not rewards.
Meltdowns occur when overwhelm exceeds an Autistic person’s ability to cope at a particular moment. That overwhelm can be driven by different things at different times, but can include sensory overload, big emotions, too many demands, unexpected changes in routine, fear, or a combination of those elements. Meltdowns are frightening and your Autistic child is not making a wilful choice to meltdown – they want to avoid it too.
So, your response to the meltdown should come from a place of empathy. You, as the adult, should try to stay calm and be a calming presence for your child.
For more insights on how to best respond to meltdowns, please see our articles on the topic.
It is also common for Autistic people to have sensory sensitivities. We often experience certain senses or stimuli with much more intensity or, indeed, with much less sensitivity than might be expected for a non-autistic person.
We can be sensory seekers (e.g., needing deep pressure, loud noise, or lots of movement) or sensory avoiders (e.g., unable to eat certain foods, requiring ear defenders, or needing sunglasses). We can even be both with the same sense (e.g., I seek some smells, but others make me physically ill)!
For insights on how to best support your child’s sensory sensitivities, please see our article on the topic.
The question of what therapies might be useful to your child is an important one. Ultimately, there is no one therapy that every Autistic child should do just because they are Autistic. Some parents are told that there is a “developmental window” of early childhood in which children must be enrolled in therapy to achieve the best outcomes. This is simply not true. Your child might need some therapies at different points in their life, but what they need is dependent on many factors.
There are many therapies can be beneficial to Autistic people across their lifespan which help us to manage the challenges of living in a world that is not aligned with an Autistic neurology. Reframing Autism supports the use of therapies when they are approached from a strengths-based, citizenship framework and utilised to support an Autistic person to thrive authentically. Two “red flags” for therapies (whatever they are) are (a) those that intensive in nature, and (b) those that promote masking or the suppression of organic Autistic behaviours. Please read our article on a respectful approach to therapy.
Please read our position statement on therapies and interventions.
Further, therapy goals should be well considered and informed by the child themselves. Please watch this video on Triple A goals for more information.
One way that we can learn to thrive together as a family is to embrace this learning journey as an opportunity for growth and empathy. Many parents report feeling that their Autistic child has made them a “better person”, and this is definitely something to be celebrated!
We’ve collated here some other tips for ways to thrive as a family, based on parents’ feedback and experiences:
As parents of Autistic children, we are all on a continual journey of learning about Autism, our child’s Autistic experiences, and the ways that we can advocate with (or for) them in different contexts. Just as we feel we’ve found some clarity or insight into one challenge, or behaviour, or trait, something new is likely to throw us a “curve ball” that will mean we need to “go back to the drawing board” and continue to learn. This is true of parenting any child, but especially true of our Autistic children.
Don’t stop learning… As we learn more about ourselves as parents and embrace our children’s unique Autistic identity more and more, we will invariably uncover greater ways to advocate for our families.
Here are some steps that you might like to consider in your parenting journey, in no particular order:
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.