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Dealing with the Emotional, Physical, and Financial Burdens of Autism

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Dealing with the Emotional, Physical, and Financial Burdens of AutismOf all the questions that parents have during the first few months – or years – after their child has been diagnosed with autism, the one that they may wonder about the most but ask the least is probably, "Will I ever sleep soundly again?" The stress of having a child with a disability is unfathomable: you don't know what the future holds, you don't know whether you're making the right choices, you don't know if you can continue to handle the craziness of your days, and you often don't know how you're going to pay for all the special services your child now needs. Add to that the exhaustion of those sleepless nights, and you've got people who are under an overwhelming amount of stress.

Interestingly, mothers and fathers of kids with special needs tend to have different areas of stress – moms feel more stress related to caring for their children and worrying about their progress, while dads often feel more stress related to finances and the burden of paying for special services. They also often deal with their stress differently – women find some release in talking about it, but men tend to find relief in action. For example, say a clerk in a store asks a family to leave because their child is having a tantrum and it's disturbing the other customers. The mom would probably want to spend an evening talking to a good friend or relative about how embarrassed she was – just talking about it serves as a release for her. But the dad is more likely to feel like he has to take action – he may well insist on making a phone call to chew out the store manager. Because of this basic difference in approach, spouses can lose patience with each other, so you can add marital stress to an already long list of problem areas.

No matter what kinds of support families find, it's difficult to alleviate all parental stress when the child has a disability. And I don't mean the stress that any parent has. I mean clinical levels of stress that can actually lead to ill health – parents of children with autism report more health problems than other parents their age. And without help and action for their child, many can feel less energetic, and some can even lose interest in sex.

Below, I'll describe the areas of stress most likely to affect parents of children with autism and make some suggestions for coping with them. Remember: my advice is no replacement for good psychological support from a professional, a good friend, a family member, or a parent group, so please seek this out if you're feeling overwhelmed and frightened.

The Stress of Wondering About the Future
Of all the fears that keep a parent awake at night, concern about her child's future – how well her child will ultimately be able to function in the real world – is probably the biggest one.

Many children with autism do not perform well on standardized tests, and many professionals, especially in the schools, base much of their analysis on how the child performs on those tests, so the picture a parent gets of his child's cognitive abilities is often bleaker than it needs to be.

A helpful thing to focus on when thinking about cognitive levels is the brain's plasticity. Many children who have suffered from a stroke, gunshot wound, or other severe brain trauma are able to fully recover by developing neural pathways around the damaged areas. Our goal is to help children with autism do the exact same thing. We haven't yet met a child with autism who couldn't learn with good sound interventions.

Page 2Of course, while you're working with your child to lay down those new pathways, you are going to have some long days ahead. Children with autism are more dependent on their parents, especially in the early years. They often need more help with dressing, hygiene, and toileting skills than typical children. Because their language is delayed, parents may need to help them communicate. All of these demands on a parent's time and energy can feel overwhelming, and it can sometimes feel like there's no relief in sight.

Just remember that the early years are tough with all children, and while you may have a longer row to hoe than most, better times do lie ahead. Most children with autism do learn basic self-help skills, and the day will come when they won't need you to do everything for them.

Alleviate the Stress by Actively Pursuing the Right Interventions
It's scary to have to question your own child's potential, but the best way to relieve your fears is to take action with productive interventions.

The first step is to be informed. Talk to people you trust – parents who've been there, experts in the field, doctors you have a relationship with, and so on. There are a lot of fly-by-night procedures that prey on distraught parents who will do anything for their child. Make sure that the interventions you're using are scientifically sound and well documented. Make sure they've been tested with many children with autism and that they've been replicated by other experts and clinics. Also, make sure you understand their limitations – some interventions only work on a small number of symptoms or on a small subgroup of children with autism. If you're going to spend time and money for interventions, be informed about the degree and extent of the change they may bring about.

When to Be Wary
There's plenty of evidence showing that children with autism do better when parents are actively involved in the intervention and when programs are coordinated. Find programs that encourage you to be involved – you should be learning all the procedures and coordinating your child's program across every environment. You can't do that if you're being shut out. If a treatment provider tells you that you can't watch the sessions or that your child does better when you're not there, this is a RED FLAG. It may be reasonable for a therapist to request a few sessions alone to bond with the child, but more than that just doesn't make sense, and the therapist needs to communicate fully with you so that you know exactly what's going on at all times.

Page 3If a clinician tells you that she's not documenting any type of changes, be concerned – the only way to evaluate whether a treatment program is working is to analyze the changes your child is making. Also be wary of any therapist who says that he's working on the "parent-child bond," and that fixing your relationship with your child will improve her behavior.

In other words, if your therapist is excluding you, blaming you, or using techniques that do not have measurable outcomes, you should consider looking for another therapist or agency.

The Stress of Feeling Emotionally Cut Off from Your Own Child
Most children with autism don't seek adult attention and don't share things they enjoy or are interested in. Children with autism don't usually get pleasure out of simple little social games like peek-a-boo, and they probably won't come running when you call out to them that you see something interesting out the window. These simple and meaningful little interactions bring out the best in parents, whose very attention usually acts as a positive reinforcement for their children's responsiveness, but unfortunately they don't often happen when a child has autism. For this reason, parents of children with autism need to master a whole new set of parenting skills, which adds even more stress to their emotional lives.

Sadly, many wonderful parents feel that they lack competence in dealing with their child with autism. It can be strange, alienating, and depressing to feel like your instincts are wrong when it comes to interacting with your own child. People frequently go too far in the opposite direction and stop having any natural parent/child interactions, worrying that if they relax and just fool around or talk nonsensically with their child, they'll lose precious moments of intervention time.

There are interventions that increase parents' stress by requiring unusual and difficult-to-engineer interactions between them and their child, and there are equally effective interventions – like those described in this book – that can be implemented in the context of natural activities. Don't feel like you have to sit down and spend hours drilling your child – you'll end up feeling guilty either because you don't spend as much time drilling her as you think you should, or because you're taking time away from other important people in your life to do so.

Your child will learn more if you weave interventions into the context of daily activities, and your family life will be stronger for it.

Find Ways to Appreciate Your Child: Focus on His Strengths and Celebrate His Progress
Your child may have areas that need intervention, but every child also has special areas of strength. Don't just focus on the problem areas. Areas of strength can be used to improve areas of weakness. Focus on these areas of strength. Expand these areas.

For example, we worked with one preschooler who liked books but never engaged in any other kind of play, not interactive play, not pretend play, nothing. Rather than force him to play with toys he didn't like, we started using the books for imaginary play, pretending we were doing what the characters were doing. We were also able to use the books to work on turn taking, social conversation, and academic skills. Over time, he learned to pretend, to share, and to make comments about the stories. And by the time he got into kindergarten, he had learned to read and was able to read out loud to the class. This greatly impressed his classmates, who sought him out to read to them during unstructured class times.

Page 4It's also important that you celebrate improvements, no matter how small. It's easy to keep thinking about how far behind your child is, but if you focus on the improvements he's made, you'll realize how far he's come. And be sure to share your joy in his progress with the people who love him and you.

Lastly, don't forget that your child is still your child, and that every child wants to feel loved by his parents. Any activity that you and your child enjoy together is precious, whether it's spending a half hour curled up on the sofa watching a favorite television show or going out for ice cream. While it's necessary to alter some of your ways of interacting with your child to facilitate his learning, it's equally necessary to maintain the basic loving relationship of parent and child, and if you're only thinking of yourself as his therapist, then you need to find your way back to being a parent again.

The Stress of Maintaining a Regular Family Life
Having a child with autism can change the family dynamics. Many parents – especially moms – can get so involved with the child with autism that they practically forget they have a spouse and other children. That's why it's important to develop interventions that are in the context of natural activities the whole family can enjoy. If you have other children, teach them how to interact with their sibling in positive, enriching ways. They can be great helpers. Research suggests that siblings of children with autism do not experience the high levels of stress that their parents do and are not excessively worried, so don't feel you have to "protect them" from the disability. And, as adults, siblings of children with autism have a unique understanding of what goes on in day-to-day life and can be especially compassionate professionals. I've seen many siblings go into the field of disabilities as a result of their childhood experiences.

Again, remember that interventions have to work for the whole family system. If a program is requiring you to do things that interfere with your family's routines, or if the program is teaching a child to use a behavior that does not fit with your personal or cultural values, you must tell the person who is designing the program.

And insist that you and your spouse spend time alone together and that you get breaks from your job as caretaker and therapist. Don't be afraid to ask for help from relatives, friends, and others. If some times of day are especially difficult for you, hire a helper or find a volunteer from your local youth group, high school, or college. You'll be a much better parent if you have help, and you'll be a much better spouse if you have some free time. A good marriage and a happy family life will do wonders for every member of your family, including the one with special needs.

Financial Stress
Dads, especially, feel stress in the area of finances.

Intervention for a child with autism can be very costly, and dads bear most of the financial burden in a lot of families. While no one will admit it, the truth is that agencies that are designed to help people in need – schools, insurance companies, centers for individuals with disabilities – are often reluctant to use their resources to help a child who will most likely need intensive intervention for many years. So not only do you have the stress of dealing with your child's severe disability, but the treatment you need to overcome it is expensive, and no one wants to pay for it.

Page 5If you can't afford the intervention, look into other sources of support. Schools usually will cover the costs of an established intervention program. Many states have regional centers that assist with the costs. Insurance companies often cover costs. Universities often have gift funds or grants that can help. And many universities and high schools have volunteer programs that might provide you with help for free. Keep looking. There are agencies that will help you financially.

Question: The developmental psychologist we saw told me that my child has autism and is retarded. This was a double whammy and extremely distressing to my family. Can children have both?

Generally, diagnosticians will try to find a primary diagnosis, then a secondary, if one exists. Children with mental retardation tend to have verbal and nonverbal areas that are delayed fairly equally, while children with autism usually have some relatively higher abilities, most often in the nonverbal areas, such as putting together puzzles, figuring out how the video machine works, and so on. In addition, children with autism often meet most of their developmental milestones in the motor areas, such as sitting up, walking, and so on, on time, whereas children who have other types of disabilities may not.

It's possible that because your child is delayed socially and verbally, he's not scoring well on tests, which may give the impression that he's retarded. Keep in mind that it's very difficult to test children with autism, as these children are usually uninterested and unmotivated by the tests. Many children score better under nonstandardized conditions. You can often tell by observing the child if the nonverbal areas are higher than the verbal areas. Does your child play with toys and/or figure out tasks such as opening a latch to get a treat or fitting a key in a door? I'll never forget the dad who told me that he was watching his son take a vocabulary test: when the son was told to point to the bed, he pointed to the oven. The dad said that every night he told his son to jump into bed, and he always went straight to bed – not once had he ever jumped in the oven! Again, context makes a big difference in how children with autism perform.

Again, remember that settling on a diagnostic label is less important than teasing apart, one by one, the symptoms your child is expressing and developing an individualized intervention plan to specifically address those areas.

Question: My child's teacher says that my child has both autism and hyperactivity. Is this possible?

Many children with autism have activity levels that are either higher or lower than that of their peers (hypo- or hyperactivity). This may be because the children aren't learning socially appropriate ways to interact, because they're not getting environmental stimulation in a typical way, or because learning is difficult, so they "tune out" and appear lethargic. Their active avoidance of activities may also make them appear more active than their peers. As the children begin to learn how to interact in socially appropriate ways, and as their communication improves, the activity levels often stabilize.

Page 6Hyperactivity can also be associated with self-stimulation (in other words, they have an excessively high activity level in the form of repetitive behavior) – the children may need a certain level of stimulation, and they're not getting it in a typical way. Whatever the reason, you can change the activity level of your child through good intervention programs.

Question: Because my husband works during the day, I'm the one driving my son to all his therapies and taalking to all the clinicians who work with him. So when we need to work with him at home or when he's being disruptive and needs intervention, my husband always says, "You're the one who knows what to do." I'm tired of being the only expert in the family, but I have to admit it's hard trying to explain in detail what we're supposed to do. How can I make this more equal?

Often, the parent who's around more will acquire more strategies for dealing with the child with autism, which can set up a cycle – the more she learns, the more she's called upon to do; the more expert she becomes, the more she continues to do. Your husband may genuinely feel like he's not as knowledgeable or capable as you when it comes to dealing with your child, but that doesn't mean he should excuse himself – it means he should catch up.

Schedule some one-on-one time for him with a therapist you both like on the weekend or in the evening, so he can learn successful strategies for dealing with your child. Then make sure he spends some time with your child each week as well, doing activities that are fun for both of them. We worked with one family whose child needed to develop socially. When we planned indoor activities, the father always got "tied up at work," but when we tried planning outdoor activities – a visit to the park or a hike – he never missed a single one.

Remember that it's often difficult for one parent to "teach" the other all the strategies that come along, and depending on your relationship, it may strain the marriage to have one always dictating to the other. It's far better for you both if you're equally capable of interacting successfully with your child.

Question: I've accepted the fact that my daughter has autism and am ready to get started helping her, but my husband is furious that anyone would slap a label on a two-year-old child. He says she's just delayed and will catch up. What am I supposed to do?

You don't need to get your husband to accept a diagnosis, but you do need him to recognize that your child needs intervention to help with her symptoms. If he's uncomfortable with the term autism, don't feel you need to use it. He has already acknowledged that she has delays, so point out that it can't hurt to address those delays in a thoughtful manner, and it will definitely help. Together, you can identify the symptoms that are worrisome and ask the experts you've been seeing to recommend strategies that will help her overcome them.

If you both stay focused on the symptoms, you'll get the right results in the end, without having to stress about labels.