Carol, a mother with an Autism Spectrum/Autism Spectrum Disorder (AS/ASD) child, could easily describe how hard being a single parent was. She prayed for years for a loving husband to help her raise her ASD son and his neuro-typical (NT) older sister.
But now that she's remarried and trying to blend a stepfamily of six, Carol wonders if staying single would have served her children better.
Rachel, Carol's 12-year-old daughter, really liked Jerry at first, and Rachel was glad to see her mom dating again. As the big sister in a single parent home, Rachel had grown accustomed to helping her mom care for Andy, her 9-year-old ASD brother. Rachel also worried about her mother who was abandoned by her husband over conflicts in caring for Andy, leaving Carol essentially alone to provide financially for the family and manage the home. Jerry made her mom smile and laugh again, and Rachel loved seeing that.
Eventually, however, the initial lift that was brought to the home fell prey to the tasks of integrating two families. Jerry brought two children to the marriage, as well—a 13-year-old daughter and 10-year-old son (both NT). He shares custody with his ex-wife and the kids split their time between the two homes. It turns out that Jerry and Carol did much of their dating while his kids were at their mom's house, so no one quite anticipated what the relationships between the kids would be once the wedding took place and everyone moved in together. Part-time "getting to know you" activities became a full-time clash of realities.
Merging two families is nearly always stressful for stepfamilies—they are combining cultures, values, loss, parenting styles, financial situations, and daily living preferences, all while trying to learn to love and trust after having been wounded and scarred by the past. In the best of situations, this naturally creates stress. Add a special needs child and parenting demands to the list, and stress increases exponentially.
Jerry assumed that because his son, Tyler, and Andy were so close in age they would enjoy each other and play well together. He wanted them to share a room together, but Carol insisted that Andy keep his own room in order to maintain continuity for Andy in the midst of family change. Jerry, now Andy's stepdad, became aggravated that Andy gets "so many unfair privileges." But his frustration escalated to fear when his son started dragging his feet about coming over for visitation. When Jerry asked why, Tyler said he'd rather stay at his mom's than have to deal with Andy.
Meanwhile, things between Carol and Rachel were not good with Jerry's daughter, Jennifer. Stepmothers and stepdaughters commonly have tension while bonding, but Carol and Jennifer's relationship was complicated even more by Andy. And then there were the differences between the girls. In caring for her brother over time, Rachel had matured beyond her years; Carol couldn't understand why Jennifer wasn't the same. Jennifer seemed self-absorbed in comparison. Needless to say, the two sides—mother and daughter vs. Jennifer—remained disconnected and struggled to enjoy each other.
Like salt in a wound, these stepfamily issues just added stress to the never-ending emotional, educational, and physical care of Andy. Andy's father declined most of his visitation time, and when he did take Andy and Rachel for the weekend, he refused to honor Carol's structure for their son. Andy would get out of sync and spread the distress on the rest of the family upon returning home.
Carol was at a loss. She kept thinking that maybe she should have stayed single. Maybe she should get another divorce and go back to the way things were. There seemed to be no way to make it all work.
Is there hope for families like this one? Absolutely. There is a way to work this out with some time and the right tools. There must be growth on both sides and strong couple unity in how to manage the home, but in the meantime, they should expect stress and transition. Carol and Jerry will find hope for their family when they merge what they are learning about healthy stepfamily living and effective ASD parenting, in addition to renewing their spiritual values.
Growing as a stepfamily involves a huge amount of change, and physical and mental disabilities only make that more complicated. A person on the autism spectrum (AS/ASD) has rigid routines, has a restrictive and/or intense focus, struggles to connect interpersonally and emotionally, may have behavioral challenges, and does not respond well to change. It is no wonder, then, that many clinicians believe the divorce rate of ASD blended families to be higher than other stepfamilies. To avoid another family disruption, couples must get proactive in managing their home and protecting their marriage.
Practical help for ASD stepfamilies
A thorough exploration of ASD stepfamily dynamics would require an entire book. However, below is some practical help for commonly reported dilemmas. For more on healthy stepfamily living, read Ron's articles or books including The Smart Stepfamily and The Smart Stepfamily Marriage, and for more on ASD families read Stephanie's book Confessions of a Christian Counselor: How Infertility and Autism Grew My Faith.
As the stepparent, you need perspective.You knew when you stepped into the picture that caring for an ASD child meant carrying all the responsibilities and obligations of parenthood; however, you may not have fully understood what that meant until after the wedding. Experiencing AS/ASD on a daily basis will certainly open your eyes. It is okay to learn as you go, but learn you must. Keep an open mind; ask lots of questions; and make it your goal to unify your marriage around ASD matters.
Let us add here that we applaud your willingness to give and love in this way. You are taking on a complex family system (and the autistic child may not fully understand or appreciate that) and are doing so by choice. This is a heroic task and we commend you for it.
In many dissolved AS/ASD families one biological parent has left the marriage and parenting responsibilities to avoid stressors or responsibilities of having a special needs child. (Ironically, once you step in, they may now fight the structure or protocols you and your spouse put in place to support the AS/ASD child.) Don't feel obligated to make up for all of the birth parent's mistakes or fill all the gaps he or she left behind. Just be who you need to be and work in concert with your spouse to determine your best role. (Remember, the parent who cares for the child is the expert on ASD children.) Talk with your own children and educate them about what is needed regarding structure in the home.
Here are some additional suggestions:
If you are still dating, move slowly toward marriage. Carol and Jerry inadvertently segregated their dating time and didn't allow all of the children time to adjust to each other or the realities of an ASD parenting situation. This common mistake led to a huge problem that blind-sided them after the wedding.
Instead, take time to learn about AS/ASD while dating and share both what you're learning and experiencing with your kids (if you have them). As you increasingly consider marriage, be proactive to get all of the children together (to the extent you can) in order to consider the family mix. What happens when they are together should carry a lot of weight. In other words, getting them together is not just a "play-date," but it should affect your decision about whether you continue dating, marry, or go your separate ways. If you can't be a family, think long and hard about not getting married.
Move slowly with transitions or big changes. Getting married is a big transition. But for an ASD child, so is adding the stepparent's furniture to the home, or changing a Saturday afternoon routine to go see a new step-grandmother. Trust your spouse. Major and sudden changes may cause behavioral or emotional meltdowns and thus disruption to your family. AS/ASD persons can learn new transitions, but they must move slowly.
Lower your bonding expectations. By definition, AS/ASD persons have issues connecting relationally. This will be the same with you. Don't take it personally. Also, he or she may say socially inappropriate things when stressed like, "I don't like you;" "I don't want you here;" "I don't like those new kids—they are not my brothers and sisters;" or "I want my dad;" etc. These are expressions of difficulty with transition. Do not try to force yourself or your children into a relationship. Just focus on walking through the open doors you do have. As the child adjusts to the new normal and learns to trust you, (s)he will let you know when the door opens wider.
Connect with intentionality. A great way to bond with the AS/ASD child is through their special interests. For example, if they are into weather and weather patterns, learn about that and try to converse or do activities around that topic. Special interests are good access points for building relationships.
Learn tolerance. Learn why the AS/ASD child behaves the way he or she does. Understanding that their brain is not neurologically wired the same as other NT kids is vital. Learn all you can about their cognitive capacity and how you can work within it.
Bridge the gaps in your marriage and parenting
In our book The Smart Stepmom, Laura Petherbridge and I (Ron) outline how children respond differently to biological parents and stepparents in blended families. Even when there isn't an AS/ASD child in the home, the contrast is striking. For example, when biological parents make a mistake, their children are quick to offer them forgiveness. On the other hand, stepparents receive quick judgement and children are easily angered at them.
Biological parents are granted "insider status," which means they get automatic love, approval, trust, and are considered moral authorities. Stepchildren are deciding if and how much to love, approve of, trust, and listen to their stepparent, and in the beginning consider them "outsiders" who have to earn their way in. These relationship differences also impact how the adult views and responds to the child. For example, biological parents may inherently trust their child's explanation for how the milk got spilled while the stepparent wonders if there's more to the story.
There are even more differences when the biological parent has an AS/ASD child.
- If the AS/ASD child has had difficulties with other adult caregivers, the biological parent may be fiercely protective of the child. The stepparent may feel this is too harsh and controlling.
- The biological parent has gained knowledge of AS/ASD through the years, but a stepparent is beginning at ground zero and, therefore, at a disadvantage to know how to contribute to parenting.
- The biological parent knows what triggers the child and what causes meltdowns; the stepparent may view meltdowns as manipulative misbehavior.
- The biological parent budgets for therapy/treatment/resources; the stepparent may not anticipate those types of financial obligations.
- The biological parent knows where the child started and has watched his/her progress; the stepparent only sees where the child is now and cannot appreciate his or her accomplishments.
- In addition, biological siblings are used to the AS/ASD child and accommodating to their needs; stepsiblings are caught off guard and might feel violated by how much life is oriented around the AS/ASD child's needs.
Here are some suggestions to help parents and stepparents bridge these gaps:
Discuss your feelings without placing blame or trying to apply simple solutions (which the AS/ASD parent knows will not work). In the first couple of years, we suggest the family adapt to the routines already in place for the AS/ASD child. Changes can come eventually, but should come slowly and only after much discussion between the couple. Stepparents will likely be making many adjustments and sacrifices on behalf of the needs of the AS/ASD child, so biological parents should be compassionate with their frustrations. They should also strive to over communicate about family structure to help the stepparent and stepsiblings adapt well.
Date and dine. We also suggest couples make time to date one another—and not allow their couple time to be invaded by problem discussions related to the AS/ASD child. Reserve a business meeting for that! Date nights need to be about strengthening your "us-ness" so that love and trust foster a safe place to nurture a newly formed family and its complications.
Find some time. Each person in the home needs a hobby. The special needs child takes a lot of energy. You need time alone for self-care so you can have the energy you need to take care of the child. Everyone needs a break! NT siblings, especially, need an autism-free zone where they can get a break and be the focus of attention from parents. Autism cannot be the only identity of the family.
Learn patience.It will take time to learn about the needs of the child and to merge your family. Find outside support (e.g., a support group or local church ministry) and stay determined to the process.
Learn organizational skills. Structure and order is a must for the AS/ASD family. If that is not your forte as a parent, work at it!
Recognize the importance of spiritual strength. I (Stephanie) don't know where I would be without my faith in God and prayer. Overcoming my "Why did you do this to me, God?" struggle took lots of prayer from myself and others, but now I can see the gift our family has.
Don't neglect the child who is not special needs. Make a strong effort to engage all your children so they don't feel neglected and become resentful of the special needs child.
Find joy in small victories. Not everything is a setback, not everything has to be worked on now. When there is an accomplishment, no matter how small, celebrate it. Joy is contagious. Joy inspires hope.
Work toward prevention. Study your child and try to prevent meltdowns instead of always doing meltdown recovery. This does not mean to give in at all costs, but when going to a new environment, for example, anticipate what might set the child off. What can you do to make him or her successful in the situation and not compromise the whole family night?
Learn to be flexible. Things change; plans change; life happens. You cannot predict every eruption that may happen with a spectrum child so learn to be flexible and adapt.
Finding reward in the journey
The average stepfamily journey consists of a few predictable steps: First, a couple falls in love and decides to marry. Second, just as when two rivers merge, the new stepfamily wrestles through a number of "white water" adjustments as they figure out how to be family with one another. And, third, the once-fractured but now-bonded family enjoys smooth, rewarding waters brought about by their hard work and determination. In general, a typical stepfamily needs five to seven years to begin experiencing rewards. (Some families take longer).
Likewise, AS/ASD stepfamilies will move through similar stages, but given the complexities and various layers of an AS/ASD child, the intensity of the rapids can be even greater, and the length of time required to smooth out the white-water torrents may increase. Yet, it can be done. We hope that AS/ASD stepfamilies will be encouraged. Finding family harmony is possible, but it will require intentionality and determination.
Reprinted with permission from Autism Parenting Magazine, June 2016.