Reframing Autistic Family Life: Tips for Fostering Authentic Autistic Wellbeing at Home

Written by Emma Marsh based on insights from Autistic advocate Ashton Bartz and the Reframing Autism team

With a myriad of different sensory needs, love languages, executive functioning challenges, passions and ways to connect and self-regulate, a neurodiverse or entirely neurodivergent home can be a colourful environment!

Where one person loves order, another may need to live with everything on display because ‘out of sight is out of mind’. One person may be painfully sensitive to sound, while the other uses loud, verbal stims to self-regulate. One family member may frequently seek deep-pressure hugs from another who is dysregulated by touch.

So how can we ensure our home remains a sanctuary of rest and recovery, where everyone can have their needs met?

We asked our Reframing Autism team members to share their top tips for creating a nurturing homelife where everyone can be their authentic selves.

The resounding themes that emerged were that a safe and supportive Autistic family life embraces three core values:

• A respect for and understanding that every family member’s needs are valid – even when they compromise our own.
• A priority for safety, comfort and connection over aesthetics.
• An acceptance that family life will not look the same as it does in a neurotypical household – and this should be embraced and even seen as an indication that you’re doing things right.

Tips for meeting each family member’s needs

“This can be a juggling act because we all have different sensory needs, amounts of spoons and challenges on on any given day,” says a team member.

“But if someone’s needs are not being met, their dysregulation will soon dysregulate others, and we are all headed for chaos and entropy.”

Some ways in which our team members meet their family members’ needs are by:

• Having stim bowls scattered throughout the house with family members’ favourite fidgets.
• Hanging blackout curtains and using lamps to cater to light sensitivity.
• Downloading white noise apps or turning on fans to help create a restful environment for those with sleep disruptions.
• Keeping ear plugs or ear defenders in a central location so they’re easily accessible before loud kitchen appliances need to be turned on.
• Creating a nesting space. A living room does not necessarily need conventional sofas. If your family members prefer to nest, invest in some bean bags.
• Getting family members engaging in screen time or music or podcast listening to wear wireless headphones so they don’t disturb others. (These can often be purchased using NDIS funding as they allow access to teletherapy when needed.)
• Using existing furniture to double as sensory hideaways. An oversized table cloth on a dining table can become a cubby.
• Letting family members eat standing up and moving, or doing puzzles at the dinner table. For some, regulation comes with stillness but for others, regulation comes from keeping busy.

Tips for finding opportunities to co-regulate

With different interests and preferences for connection, finding a way to co-regulate as a family can be tricky. Here are some ways our team have found calm and connection.

• Embracing parallel play: working on your own, independent projects, together.

“So often the three of us will be sitting in the same room, all with our headphones on, watching our own things but we’re all together, and so we each have our own interests,” says a team member. “In those moments, it’s just being together that we love.”

• Finding Sites of Mutual Fulfillment (SMF): A Site of Mutual Fulfillment, a term coined by Lucy Aitken Reed, is a place or activity in which different family members all have a great time. It might be walking in nature or watching a movie together.
  

  “We have these shared passions – boardgaming – where as many of us as possible will come together and immerse ourselves in a shared passion,” says a team member. “I was not a Star Wars nerd until my kids came along and then I realised how absolutely, fundamentally cool it was … that’s a shared passion now that we all enjoy and it’s very peaceful and calming.”

Tips for doubling your productivity with body doubling

Many of our team members struggle with task initiation and have found having someone in close proximity to “body double” helps bring clarity and motivation. This person is not advising, they are merely being present, or performing an independent, unrelated task in the same space.

Sharing the love with support swapping

“We split up a lot of the household chores based on needs,” says Autistic advocate, Ashton Bartz. “I hate the vacuum cleaner with a strong, fiery passion – even with ear plugs in – so my partner will usually do the vacuuming when I’m at work so I don’t have to be around for it. I tend to do things like the dishes because the hot soapy water can really irritate his skin, then he tends to make a lot of the phone calls, but he has some memory issues so I remember that the phone calls need to be made.”

“So we kind of split things up depending on what we’re each good at. And then where there are things that we both really have difficulty with, we’ll try and utilise a service if we can.”

Learning to speak your loved ones’ love language

It can really help to identify  your family member’s love languages so that you can speak their language when you want them to feel really loved. “My love language is giving gifts. My husband’s is parallel play, my eldest daughter’s is info dumping and my youngest daughter’s is penguin pebbling, otherwise known as ‘I found this cool rock/button/leaf/etc. and thought you would like it’,” says a team member.

“”I try to show my love to each family member in ways that don’t just speak my love language, but also speaks to theirs.”

Ensuring quiet time with our passions

It’s so important for each family member to have time to recharge in their own space, filled with their passions, favourite artworks, toys, games, models or tools, where possible.

“We each have our own space that we can have autonomy over.”

“So often our weekends are just at home so we have the space and time to recharge and don’t have any kind of social pressure or feel bad about not going to all the things that all the other families are doing.”

Understanding everyone’s form of self-care is valid, even if it’s not what we’d choose for ourself.

For one family member, exercise may be what they turn to for self-care, while for another, it is napping or playing video games. This is not one family member being ‘lazy’, they are simply doing what is needed for them to be at their best. You can support your family members by helping them identify what regulates them – without judgement – and ensuring they have time to do this. It also helps to build your village of external supports such as peers and mentors to talk to.

“Drawing on professional support where possible means that my partner and I can be loving partners for each other rather than falling into the role of carer (which can certainly kill the romance),” says Ashton.

Keeping communication clear, supportive and respectful

“Everyone in our family has trouble identifying and communicating our needs, especially when they’re not being met because it means that we’re dysregulated,” says a team member. “Words are really hard for all of us in different ways.” Some ways our team members keep communication lines open are by:

• Asking lots of questions to ensure everyone has clarity.
• Allowing for collaboration and family member buy-in so people can have choice and preserve their autonomy.
• Explaining why certain things need to be done a certain way.
• Having conversations around things that are likely to be really stressful such as finances, and checking in later to give the person time to process.
• Discussing challenges that family members might be experiencing so you can offer support and manage your expectations.

“We’re not a family who can just sit around the dinner table and calmly discuss our issues,” says a team member. “I think I’m starting to realise that that’s not a realistic goal for us to be working towards and that that’s ok, and instead of working on communication in the traditional sense, we work on relational safety. We try to give each other space and grace when we can and have the spoons and we all just try to maintain faith that everyone in the family is doing their best at any given time and that we love each other.”

Building flexibility into routine

Building flexibility into your routine allows you to adjust the goal posts depending on the energy level and capacity of each family member on any given day. Our team members have achieved this by:

• Collaborating with family members to make a plan A and a plan B, so if you need to pivot, it is a somewhat expected, self-directed change. “We often think following our visual schedule is what has to happen,” says a team member. “But, actually, we have that as a structure, as a broad structure but every person can then direct what that looks like on a day-to-day basis and we try and be really responsive to how our bodies are feeling, how our minds are feeling and we’re really open about how our bodies or minds might not feel great on a day so we can’t necessarily conform to what we had scheduled – and that’s absolutely ok.”
• “Something that I use with the kids in terms of routine and I’m trying to use more and more for myself  – because we’re not good transitioners – is the sentence, ‘What will finished look like for you in this context?’” shares a team member. “So rather than have set times on stuff, we ask that question.”

“And we remember we all have bad days and sometimes everything goes off the rails a little bit but if that happens then we always apologise. We’re very open to discussing our own flaws and mistakes as well.”

This tip sheet is based on information from our online Community Workshop, ‘Autistic Home Life’ which happened on 2 July, 2023. During the workshop, our all-Autistic panel discussed the question: what does an authentic Autistic life or family culture look like in your home? For information on our upcoming learning opportunities, please visit our Learning page.