Perkins School for the Blind Transition Center

Autism and Marriage: Making Your Relationship Work Under the Pressures of Caregiving

Having a child with autism can certainly put strain on a marriage. I should know. After over 20 years of marriage with two children on the autism spectrum, my marriage came to an end.

Portrait of a happy young couple

So why am I writing an article about making your relationship work? Because it’s too important not to. My hope is that your marriage can defy the odds and not become a victim of the incredibly high rate of divorce among special needs families, which is often mentioned to be as high as 80%.

Could my marriage have been saved? Perhaps. Can your marriage be strengthened and nurtured to try to avoid divorce? Quite possibly, but only if both parents are fully dedicated to making the marriage work.

So, what can parents do to strengthen and nurture their relationship, especially when faced with the pressures of caring and providing for one or more children with complex needs? I will share my perspectives and advice, not just as a mom who was the primary caregiver of children on opposite ends of the autism spectrum who unexpectedly faced divorce and learned how to navigate the process, but also through my training and experience as a Certified Life, Divorce, and Transition Coach.

The first challenge parents face is the acceptance of the diagnosis of their child’s disability, and if they choose to embrace or deny the reality of the situation. Each parent may process a child’s diagnosis and challenges differently, and at different timelines. As with any kind of loss or change, parents find themselves going through a Grief Cycle, with emotions, reactions, and actions based on which phase they might find themselves in, with the progression usually being Denial, Anger, Bargaining, Depression and finally Acceptance. Being a parent of a child with a disability is usually not something people think about until they are faced with that reality. It takes time to process to get to the point of full acceptance of a child’s disability and that the vision they had for their child, their family life, and their future has taken a drastic turn. Some couples are brought closer together, through their commitment to support each other and the child, but sometimes the day-to-day and long-term challenges take a toll on a marriage. By recognizing and respecting when each parent may need a break or assistance, and by being able to communicate needs and feelings with the partner and with others, parents can support each other and strengthen their partnership, and in turn, better parent their child.

Oftentimes a couple cannot handle all the pressures of special needs parenting alone. Nor should they. Having a support network helps parents not feel so alone or overwhelmed and can inspire and motivate parents to try new approaches to support themselves and their child. Though they may be hard to find, there are many resources in the community to support parents and families, including mental health professionals, parent coaches, schools, disability organizations, online and in-person support groups, places of worship, as well as family members and friends. Having a helping hand or a bit of respite can help families tremendously by giving parents an opportunity to take a break from the constant demands of caregiving and to be able to spend quality time together as a couple, or even to have a bit of down time.

Many parents, especially mothers, tend to put their children first, above themselves, their spouses, and everyone and everything. They may be of the mindset that their child needs their constant attention, or that no one else is capable of taking care of their child or taking care of the child the way that they take care of them. This can result in burnout and depression, which can in turn affect the wellbeing of everyone in the household. It may seem counter-intuitive to some people, but the better care we take of ourselves, the better we can then care for our loved ones – not just our spouses, but our children as well.

Some parents may feel guilty about making time for self-care or time away from their kids. Some couples may not have had time or made time to go on a “date” or outings without their kids. I remember a couple I met at a resource fair saying they haven’t been out to dinner since their daughter, now a teenager, was born. This approach is not healthy for anyone, as it may lead to resentment, regret, or a parent finding relationships or outlets that cause detriment to one or both parents’ health or the marriage. Having a trusted caregiver watch the kids while a parent goes out for quality time with their spouse or friends can help keep the spark in the marriage and friendships. This can also benefit the child to get used to other care providers and changes in routine, and to have Mom and Dad return refreshed and energized to be the best parent they can be.

It can be scary leaving your autistic child alone with someone for the first time, not knowing if the sitter will be able to handle your child’s behaviors or needs, or how the child will react to the new person and to your absence. So start small, having the caregiver spend time with the child while you are still in the home so they can get to know and become comfortable with each other, and so you can also become comfortable with the sitter and their ability to care for and address your precious child’s needs. And when you are ready to actually go out, you can start with short outings, and work up to longer periods of time. For example, you might start with a trip to the grocery store, work up to go out to a restaurant and a movie, and eventually a romantic weekend get-away! Doesn’t that sound nice?!

Make time for yourself, your spouse, and your marriage to increase the chances of success for your marriage and for the well-being of everyone in your household. You are all worth it.

Mary Ann Hughes, MBA, is a Special Needs Certified Divorce Coach and is Founder of Special Family Transitions LLC. For more information and resources on special needs divorce and transitions, please visit SpecialFamilyTransitions.com and follow us on Facebook, Instagram, and YouTube. You can also reach Mary Ann at maryann@specialfamilytransitions.com.

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