Prioritising parent/carer relationships in autism families

Home
aUpdate
Prioritising parent/carer relationships in autism families
February 16, 2024

Even at the best of times, and in the strongest of relationships, parenting and caregiving is hard work!

And when you’re parenting or caring for a person with a disability, this journey can sometimes be harder. From a lack of autism understanding both within and outside your family to the stress of managing therapies (and their cost), being a parent of an autistic person can have its fair share of challenges. 

Having a partner or spouse that you’re able to celebrate successes and navigate challenges with is particularly vital in autism families. Although parents with an autistic child or children might experience more challenges than parents with neurotypical children, it’s still possible for you and your partner to have a strong and positive bond. And when your relationship with your partner/spouse is thriving, it’s much more likely that your autistic child will thrive, too.

In this post, we discuss tips for prioritising and caring for your relationship with your partner or spouse as parents/carers of an autistic person. We’ll share how you can successfully navigate the early days of your child’s diagnosis, prioritise your relationships as part of your daily routine and access further support if you need it.

  • In the early days
  • Managing day to day
  • Autistic parents and carers
  • Unhealthy relationships and relationship support
  • Your next steps

In the early days

Whether you anticipated the news, or it was totally unexpected, receiving an autism diagnosis for your child or young person can bring up different emotions for different people. Just as every autistic person is unique, every experience of receiving a diagnosis is too, both for the autistic individual and the people around them.

Many parents/caregivers have a different reaction to their child’s diagnosis than their partner or spouse. One parent might reach the point of acceptance quicker than the other. One parent might take more time to process the news and understand what it means for their child. And some parents might resist the diagnosis or experience a period of denial.

Although experiencing some denial is quite common, extended periods of denial can cause significant stress for the other parent and prevent the child and the rest of the family from accessing the support they need. Denial can also come from outside of the relationship, such as from extended family members, which can be equally hurtful.

You can watch the video below for strategies on navigating denial as a parent of a child with autism, or you can visit this page on what to do when you encounter unsupportive people.   

There are also a lot of myths around autism that are particularly upsetting for parents to hear when their child has recently been diagnosed. Misconceptions around the causes of autism and what your autistic child will and won’t be able to do can cause tension, especially when these myths are perpetuated by those close to you. These harmful myths can also involve autism parents directly, such as the fabricated idea that 80% of couples with an autistic child will divorce.

Despite there being no evidence to back up these myths, they still circulate widely in the community and online. Being selective and cautious about who you’re spending time with and what sources of information you’re consulting in the early days is important for safeguarding your well-being and your relationship with your partner. Minimising contact with certain people or blocking or leaving online spaces that make you feel overwhelmed is not selfish, it’s healthy.   

The process of pursuing an autism diagnosis and the period after receiving one also involves a huge amount of organisation, decision-making and routine change that impacts an entire family. From organising and paying for an assessment and subsequent therapies to managing challenges and the needs of other family members, this is a time often marked by intense emotional and financial stress for parents and carers.

The ability to have productive and respectful conversations during this time cannot be overstated. Here are some tips for discussing the big decisions and changes that need to occur in the early days of a child’s diagnosis:

  • Ensure you’re having serious conversations in an appropriate time and place and check in with yourself and your partner to also ensure you’re in a decent headspace. Trying to have these discussions in a spare five minutes while you’re both frustrated will rarely be successful.
  • Listen to your partner without judging or criticising before responding to fully understand their perspective.
  • Use ‘I’ statements rather than ‘you’ statements to address disagreements. For example, ‘I feel frustrated that you haven’t considered the therapy options I’ve looked into,’ as opposed to ‘You never listen to me.’
  • Give yourself and your partner time to reflect on points that have been raised. Sometimes, a person just needs some time to come around to an idea or reach a point of acceptance.

Managing day-to-day

As you settle in to life post-diagnosis, it usually get easier for you and your partner to manage the additional responsibilities of raising an autistic child alongside life’s other commitments. Here are some tips that you can take on board to prioritise your relationship day to day.  

  • Make time for each other each day. This could be time after the kids have gone to bed, or even catching up for five minutes over coffee before the day begins.
  • Keep communication frequent and open. Even if you or your partner’s situation seems insignificant, discussing things frequently and without judgement helps both people feel heard. It also helps prevent small issues or resentment from escalating. This doesn’t mean you always need to agree, but if you do have a disagreement, ensure it remains respectful.
  • Celebrate the wins, no matter how small. Perhaps your child slept for an extra half an hour, or they were able to tolerate being in the same room with a new food. This is a huge achievement! Recognise when you, your child or your partner have made gains.
  • Share roles and responsibilities where possible to keep the workload fair. Playing to each other’s strengths often helps in this regard (e.g., organisation, communication).
  • A little bit of humour can go a long way – sometimes a good laugh is all we need to manage our stress or get through a difficult moment.  
  • Don’t be afraid to ask for help from your partner and offer it in return. Suffering in silence helps no-one, and your partner will always be grateful for that extra bit of help where you can manage it.  
  • Lean on your support networks. In moments where your partner can’t be there, having someone else to turn to is crucial, and relying on your partner to meet all of your needs often causes additional pressures.
  • Remember the value of kindness and forgiveness, both with your partner and yourself. You will both inevitably make mistakes, have misunderstandings and encounter conflict at points along the journey – forgiving yourself and your partner in these moments can make an enormous difference. After all, you’re only human!

Autistic parents and carers

Much of the information and resources available to parents of people with autism rarely addresses the needs and experiences of parents who are autistic themselves. This can lead to feelings of isolation for these parents and impact the way they view their parenting, their relationships and even themselves.

If you or your partner is autistic, it’s important that you’re able to have an open conversation about what accommodations and support they require to be the best version of themselves. Here are some suggestions:

  • Find other autistic parents to speak to either in-person or online to share your experiences and perspectives with. You might learn some great tips for managing your own wellbeing as an autistic person while caring for your child or gain a better understanding of your partner’s experience if you’re neurotypical.
  • Consider situations that trigger you/your partner. For example, if busy places your child wants to go to such as shopping centres or theme parks cause sensory overload, consider if their other parent or a relative could take them child, instead.
  • Know the signs of autistic burnout and carers’ burnout and the risk factors for you and your partner. Addressing burnout as quickly as possible is crucial for the entire family’s well-being, but preventing it is even better.
  • Identify areas that you may require further support in and whether the support options you can access can address these areas. Check out our guides to support options for autistic adults and what makes a good support service for autistic people.‍
  • Ensure you’re implementing strategies to maintain your health and wellbeing. This is not a substitute for professional support, but it can help it be more effective.

Research suggests that autism is strongly genetic, meaning there will often be more than one person in a family on the autism spectrum. Sometimes, the process of pursuing an autism diagnosis for your child can lead to the realisation that other family members may be autistic, too. If you or your partner believes they may be on the autism spectrum, you might benefit from visiting the adults section of our free digital toolkit ‘Autism: What Next?’

Unhealthy relationships and relationship support

Although it’s normal for there to be conflict and disagreements in relationships, they shouldn’t be a daily occurrence or become personal or aggressive. Your physical and psychological safety should also be respected.

Sometimes, relationships can enter unhealthy territory, and being able to identify when this happens sooner rather than later is important. Below are some signs that your relationship with your partner might be in an unhealthy state:  

  • Lying and broken promises
  • Disrespect, insults and humiliation, either public or private
  • Ableism (being excluded, patronised, harassed or discriminated against on the basis of your disability/disabilities)
  • Manipulation and controlling behaviour – being forced to do or not do things against your will
  • Gaslighting (being manipulated to question your own memory and sanity)
  • Frequent criticism of your appearance, intelligence, opinions or behaviour
  • Unequal workloads (e.g., doing much more housework than your partner)
  • Social isolation (being discouraged or not allowed to see or contact others)
  • Fearing your partner or being afraid to do things around them
  • Ignoring your boundaries or giving in to your partner to keep the peace – being punished for standing up for yourself

If you and your partner need support to address issues in your relationship, you’re not alone. Seeking help will benefit you as individuals, a couple and a family and is never a shameful thing. You can find a list of Australia-wide support services here:

Abusive and unsafe relationships

Sometimes, a relationship can become abusive. Abuse doesn’t just involve being hit or hurt; it takes many forms and can happen to anyone at any time.

  • Physical abuse: Being deliberately hurt or having control of your body taken away.
  • Verbal abuse: Being yelled or sworn at, called names, insulted, patronised, or manipulated. This also involves being given the ‘silent treatment,’ where someone refuses to talk to someone and blames the other person for their silence.   
  • Emotional abuse: Being threatened, manipulated, isolated or intimidated. It can also look like excessive jealousy or having your whereabouts monitored.
  • Financial abuse: Controlling your spending, preventing you from accessing your money, excluding you from financial decisions or stealing money from you.
  • Sexual abuse: Being threatened, deceived, or forced into sexual behaviour or a sexual act without consent.

Remember that abuse is NEVER your fault, regardless of what the perpetrator or others may try to suggest. You deserve to be safe and respected in all your relationships and to have access to help when you need it.

If you believe your relationship is unsafe or abusive, it’s vital that you tell someone. This could be someone in your support network, such as a family member or friend or someone else you trust, such as a mentor or colleague. If you are unable to reach out to someone you know, visit this page for a full list of national and state/territory-based support services. In an emergency, always call 000.  

Further support

Parenting and caregiving can be tough, particularly with a child on the autism spectrum. But it can also be incredibly joyful and rewarding. Despite what you may think and feel in the early days, your relationship with your partner can be successful, and in turn will help your child and entire family unit to thrive.

For more information, resources and support for parents and carers of autistic people, you can check out the pages below:

Share this article

I am the text that will be copied.

You might be interested in:

aUPDATE

Autism and the Paralympics

We spoke to autistic Paralympians Ella Pardy and Ruby Storm about their experience in Paris and as athletes on the autism spectrum.
Read more
aUPDATE

Autism and women's health

Read more
aUPDATE

Autism and bullying: signs, impact and support

Read more
aUPDATE

Friendships for autistic adults

Read more