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Coping Tips for Parents of Children with Autism

Keeping Control

Coping Tips for Parents of Children with Autism Keeping Control of Your Emotional Life
Because our society has not yet learned to accept disabilities gracefully, parents are distraught when they are told that their child has one. We have tried and tried to help parents deal with the stress of discovering their child has autism and then the stress of coping with the demands the disability places on their time and money, but even with support, parents inevitably go through some tough times.

Here are some common feelings parents have after first learning that their child has autism, and some suggestions for coping with them.

Denial
Parents know when their child has a disability. In fact, most of my parents know it before their pediatricians. But pediatricians are trained to calm worried new parents. And the truth is that we parents want to hear that our children are fine. So if the pediatrician tells a parent of a child with autism something like, "Don't worry, he's not talking because he's got an older sister who talks for him," or a well-meaning relative says, "His dad didn't talk until he was five," the parent may seize on those excuses and cling to the hope that nothing is wrong.

One mother even told me that she was pretty sure something was wrong with her child but never aired those concerns to the pediatrician and always just told him that things were fine. She was relieved after each well-baby visit that the doctor didn't "find" anything wrong. Of course, the doctor only saw the child for fifteen or twenty minutes a few times a year, and without the mother's prompting, he didn't even think to look for signs of a disability. She lost a lot of time not wanting to admit what she was seeing with her own eyes.

Denial and guiltIn the past, doctors didn't always ask questions that focused on potential developmental disabilities, but these days, especially with the rise in autism, they're much more likely to do exactly that.

Even after a child is diagnosed with autism, some parents will continue to hope that a mistake has been made and nothing is wrong at all. They'll insist that their child is merely a late talker, and the diagnosis is way overboard. Others may try to make excuses for their child's behavior, such as saying, "All two-year-olds tantrum." Others will bring their child to three or four experts, hoping to find a dissenting opinion, before finally accepting the diagnosis – and the necessity of taking action.

Sometimes one parent stays in this stage of denial for months or even years, long after the other parent has already accepted the need to start taking the necessary steps toward helping their child. Unfortunately, a spouse's unwillingness to come on board can put a huge strain on a marriage.

It's very difficult to find out that the child you love so much has a disability, and it's very natural and understandable to hope against hope that the people who have diagnosed him are in error. (Although, as I discussed earlier in the chapter, errors in diagnosis are rare.) But don't let your uncertainty about the diagnosis get in the way of taking action. I've said it before, and I'll say it again: the label doesn't matter nearly so much as the symptoms your child is displaying. Deny the autism if you must, but don't deny what your child is doing, and most of all, don't deny him the help he needs to overcome any symptoms he's expressing.

Guilt
Most parents feel overwhelmed with guilt when they discover that their child has autism. They wonder if they did something during the pregnancy or shortly after their child was born that may have affected the child. I even had one parent ask me if her child could have autism because she and her husband had lots of arguments when the child was a newborn, and they weren't getting much sleep! Another mother asked me if her child could have autism because he wasn't breast-fed.

Feelings of guilt have been compounded by early unsubstantiated psychoanalytic theories that suggested that cold, unloving mothers were the cause of autism. Since then, scientific research has shown that mothers of children with autism are no different from mothers of children without autism, but not until after a lot of heartsick women had already been condemned as bad mothers.

It's natural to wonder if you could have prevented your child's autism, but you need to remember that guilt doesn't help your child. There is no evidence pointing to a parental cause, and while there may be some type of environmental factor to blame, that's not known yet. Don't waste your time torturing yourself with vague fears when you could be swinging into action.

Blame and angerBlame
There are increasing numbers of multiple children with autism in the same family, and it's logical to try to think where the genetic mix-up could have been, but too often family research turns into family blame. I can't tell you how often I've sat in my office and had one parent tell me that the other parent has symptoms of autism – I've even had both parents tell me, confidentially, that their spouses have symptoms of autism!

You know what? We all have symptoms of autism – each symptom falls on a continuum, and somewhere on that continuum it turns from typical to a disability. A husband who bites his fingernails or doesn't particularly enjoy socializing isn't necessarily genetically responsible for producing a child who rocks back and forth constantly. And a mother who has trouble expressing her emotions and likes to sit in a rocking chair isn't necessarily genetically responsible for a child who fixates on spinning fans.

I would guess that almost every family has some member with mental disabilities in its lineage. While assessing these issues may be helpful in genetic planning, playing the blame game doesn't help your child get the help he needs – nor does it help your marriage in any way. The last thing your spouse needs is to feel like he's done something wrong in mating with you. You had children together because you loved each other.

Having a child is always a gamble. Sometimes a child is born with a disability. That's the harsh reality. Passing around blame is an emotionally harmful game that serves no useful function.

Anger
Some parents feel angry when their child is diagnosed with autism. I met with one family whose four-year-old son had just been diagnosed with mild autism, and the dad sat in the corner, arms crossed, glaring at me throughout our first session. Not long after, he realized that I was doing my best to help his son, but at that point he just felt angry, and I was the nearest target.

Anger isn't always a waste of time. A friend of mine once pointed out that people who get angry under adverse situations and who channel that angry energy toward appropriate and useful action will often succeed where others fail. I'm all in favor of the kind of anger that makes you say, "We're going to lick this thing!" But anger that just makes you sullen and resentful toward people who are trying to help you is working against you.

IsolationIsolation
When a child is diagnosed with a disability, you would expect society to rush in and help. But that doesn't happen. Parents are usually left alone, without support or guidance, to figure the whole thing out. Children with disabilities are excluded from community schools, activities, and social events on a regular basis. In fact, I've been told by some families that their children are even excluded from family gatherings.

It's not surprising, then, that many parents feel alone and isolated when their child gets a diagnosis of autism. Not only can there be very real social exclusion, but there's an emotional isolation as well. Parents feel alone in their grief. They have spent the last few years going on outings and interacting with friends whose children are developing typically, and now they are devastated by the fact that their own child has significant disabilities in a variety of areas.

Rather than continue to socialize as normally as possible, some parents will go out of their way to avoid having to compare their child to their friends' children, frequently declining invitations to parties and outings. The fewer invitations they accept, the fewer their chances to connect with friends and realize they can still enjoy themselves.

Similarly, many parents allow their fears of how their child might act out in public to prevent them from leaving the house. This starts a bad cycle: the child is isolated socially and therefore doesn't learn to behave in social situations; as his behavior in social situations deteriorates, the parents feel even more compelled to stay at home. And so on. Meanwhile, the parents are losing touch with their friends and relatives, and their feelings of emotional isolation increase until they feel truly abandoned.

If your child has behaviors that make it difficult to go out in public, read the chapter in this book on disruptive behaviors and start getting control of the problem behaviors. Try to create as many positive social opportunities as you can, so your child can learn and grow. Meanwhile, find someone to help you out now and then, so you and your spouse can still go out together.

DepressionIf the greater problem is that it's emotionally difficult for you to see other children who are developing typically, that's something you're going to have to come to terms with. I would recommend trying to find a good friend, a family member, a psychologist, a support group, or even your child's therapist to talk to about these feelings. Many parents also report that on-line chat groups can provide a good form of emotional support. In fact, one mother of a child with Asperger's syndrome met another mother on-line whose child was very similar, and not only did they offer support for each other, but they also shared ideas for working through challenges. You need to be able to talk with someone who'll listen and sympathize. Remember that your friends are probably full of admiration for you right now because you are showing strength in dealing with something you've all had little experience in. Enjoy their company and be honest with them, and you'll find yourself grateful to have friends who'll rally around you.

Depression
Not surprisingly, depression is common in parents of children with autism. Sometimes it lasts a long time and sometimes just a short time. I have some parents who experienced such depression after their child was diagnosed with autism that their doctor prescribed antidepressants. Once again, I recommend finding someone you can talk to who will help you work through your feelings of sadness. It's natural to be depressed upon hearing that your child has a disability, but if that depression leads to inactivity and withdrawal from society, it will damage you, your marriage, and your children.

One thing that parents have said to me over and over again is that their initial feelings of depression and hopelessness lifted once they plunged into actively seeking interventions for their child. Nothing is more depressing than uncertainty and inactivity. When you start taking the necessary steps to improve your child's symptoms, you'll feel energized and hopeful again. Raising children is always a roller-coaster ride, but a sense of competence and optimism will see you through a lot of the harder times.