Raising a developmentally different child is a challenge for most parents. The challenge begins when parents first learn that their child is not “normal.” For some parents, this occurs at or before the child’s birth. For others, their child, who appeared “typical” at birth and even for several months or years thereafter, suddenly develops problems that are not so “typical.”
In either case, once parents learn – or even suspect – that their child is developmentally challenged, a natural period of mourning and sadness occurs, for them and also for their family members. The fact that family members (i.e., grandparents, siblings, uncles, aunts), and even close friends are affected is very important to consider, because these people are part of the parents’ usual support system. They may have a difficult time responding to the grieving parents because they, too, are dealing with their own pain and loss.
Autism is a multifaceted disability. Unlike other developmental disorders that have more clear cut causes and effective treatments, autism is a disorder of as yet unknown origins, one that offers no simple answers. Parents whose child has been diagnosed on the autism continuum (autism, Asperger’s or Pervasive Developmental Disorder) experience a myriad of emotions. They become, through no choice of their own, pioneers in an unknown world of disability terminology, ideas, programs and treatments. However, in learning to negotiate this unfamiliar territory, parents of special needs children can benefit from practicing a few basic strategies that will ensure success for both themselves, and their child.
1. TAKE CARE OF YOUR OWN EMOTIONAL HEALTH FIRST
For all parents, there are some issues that, if not examined and resolved, will likely interfere in their ability to facilitate positive development in their child. A major issue to contend with is the loss and mourning of the child they fantasized about and all the concomitant fantasies such as, “I wanted my daughter to be a ballerina,” or “I hoped my son would have a chance at the major leagues.” The expectations they had for their child - including college, marriage, and procreation – are no longer “givens.” Suddenly parents are faced with the possibility that their child may be dependent on them for quite some time, if not for his/her entire life. What happens when the parents are no longer able to care for the child? In a flash, parents are flooded with having to learn about a disability they had never or only vaguely heard of. They encounter professionals, teachers, doctors, and other individuals who, although they may be pleasant and knowledgeable, they would rather not have to deal with these professionals in the first place! All of this occurs while parents are grieving. It is sometimes very tempting to launch into a knowledge acquisition phase and ignore their most important feelings—the loss of the typically developing child they once dreamed about. If you take care of your own emotional well-being first, you’ll have lots more energy to move into the next stages.
Parents whose child becomes disabled some time after a period of “normalcy” have yet another emotional burden to deal with—betrayal. They thought they had a “normal” child and suddenly, their whole world gets thrown into confusion.
For parents to be effective in guiding the development of their child with autism, it is very important for them to work through their own emotional reactions. Both parents as individuals, and the marriage, will be affected by the child’s developmental challenges. Seek professional help as soon as you can, to ensure that you can give your best to your child.
2. OBSERVE! TAKE THE TIME TO LEARN ABOUT YOUR CHILD’S EMOTIONAL RESPONSE SETS TO A VARIETY OF SITUATIONS, INCLUDING HIS/HER REACTIONS TO YOU.
The next common challenge that faces most parents of children with autism involves the child’s emotional reaction to the parent. Research has proven that as a species, we are innately programmed to respond to vulnerable creatures (i.e., young children and young animals) because they are programmed to elicit a response in us. Developmentally challenged infants and toddlers do not necessarily provide us with the responses that trigger our innate impulses to care for them. Some children initially don’t respond much at all (i.e., the flacid, passive baby), others have responses that we don’t understand (i.e., the colicky, non-cuddly baby), and many respond in a different way every time the parent approaches. These unexpected response styles create confusion and a sense of inadequacy in many parents.
What do you do? Spend time observing your child. All parents do this instinctually. But, as parents of a child with autism, it is important to remind yourself on a regular basis that, although your child is not responding in the way you thought she would, she still is responding. You’ll need to don the role of detective, discovering clues and solutions to obtaining optimal responses from your child.
Find out what gives your child pleasure and what turns your child off. Even a non-response is a response. It usually means that the baby/child is in some way uncomfortable with the approach or with the stimuli, and instinctually pulls away for protection. Watch how he reacts to various people, places and things. Keep a diary or a record; you’ll start to discover patterns of behavior that will be clues for you. Learn to adapt yourself to your child’s changing moods. Most of all remind yourself everyday that whatever your child’s emotional responses may be, they do not mean that you are a failure.
3. FOLLOW YOUR CHILD’S LEAD! PARTICIPATE WITH YOUR CHILD IN THOSE ACTIVITIES THAT BRING HIM PLEASURE—EVEN IF IT FEELS STRANGE TO YOU.
Joining your child in his world requires an essential parenting skill—imitate and follow. Don’t make demands, don’t ask him to perform (i.e., “What color is this?” or “What does a cow say?”), and don’t direct the play. While it may sound simple, it’s not! As parents we all want to feel proud of what our children know. We get great pleasure in asking them to show off, especially in front of other people so they can see what great parents we are. However, most children don’t like to be drilled (nor do adults, for that matter), and when too much of this occurs, the child with autism may simply withdraw, or do the opposite, have a tantrum. Truly joining in your child’s world gives him the feeling that you treasure what comes from inside of him, not only what you draw out of him. It says to him, “I’m so delighted in you that I’m going to sit here with you and watch what you do, do it alongside you, and wonder with you why this is so fascinating.” Granted, as parents we will always be tickled by our child’s responses to our approaches or our questions, but expecting too much of this will backfire on you. Instead, join in, talk about what you and the child are doing (i.e., “Boy, these rays of sunlight on the floor are really interesting.” or “You really like the sound of that block banging on the table.”). Finally, don’t be afraid to add to the play with your own creations in the hope that your child will someday become interested in you, too. If your child has limited awareness of others, you can gently create situations in the play to get your child to notice you. For example, if he is building with blocks, you might “accidentally” knock them over then help build them up again.
Most children with autism have special interests. Parents are often encouraged by professionals to distract the child from their particular special interest. However, sometimes making use of that special interest is a great way to achieve long periods of engagement with your child. There is a fine line between discouraging a child’s special interest and passing along the message that what interests him is of no interest to you. Encouraging the child’s interest can lead to emotional engagement and provide the child with the sense of being valued.
4. FEELINGS TALK! PUT WORDS TO YOUR CHILD’S FEELINGS.
Whenever possible, label your child’s feelings for him. Children who are able to identify their internal experiences have a better sense of who they are. Many children with special needs have a difficult time identifying abstract concepts, and feelings are abstract. Therefore, as a young child learning about the world and about himself, one important area of learning has to do with emotions. When you set limits and your child exhibits anger (i.e., throwing things, tantrumming, etc.), one of the first things you can do is label the emotion—“You’re so mad when mommy says you have to stop playing.” You may, of course, need to make other interventions, but don’t forget to label that feeling—even for young infants!
5. POSITIVELY PRAISE! PRAISE YOUR CHILD’S APPROPRIATE BEHAVIOR.
As a parent it is easy to fall into the criticism trap, especially when we are overwhelmed and faced with difficult behaviors. However, it is important to remember basic behavioral principles: whatever behavior you pay attention to - and attention can be either positive or negative - will increase. Therefore, if you are criticizing and not praising, the behavior you criticize will increase. However, if you praise, praise, praise the positive, you’ll get more of it. Sometimes it’s helpful to put yourself on a behavioral program—challenge yourself to praise your child every 2-3 minutes. Statements such as, “I like the way you’re playing with your toys,” or “I like the voice you used to ask for a cookie,” will go a long way towards reducing the frequency of banging, throwing, and whining. Think of praising your infant or child as providing her with a “gleaming” mirror of herself in the gleam in your eyes when you look at her, in the gentleness of your voice when you talk to her, or in the soothing sense of your touch (does your child like a soft or a firm touch?). Let your child know that she is loveable and worthwhile at least 100 times each day!
6. CAPITALIZE ON SPECIAL-NESS! FIND OUT WHAT IS SPECIAL AND UNIQUE ABOUT YOUR CHILD AND CAPITALIZE ON IT.
Your child may have special needs and he may be different from other children, but he is also special in his own ways. It’s your job to figure out where he’s special. Once you do, capitalize on opportunities to let him experience his special-ness. For example, if he loves numbers, engage in activities where he can be the “smart” one and find the numbers needed. Whenever your child proudly brings you a “gem”—a lump of playdough, a scribble on a paper, etc.—act as if it is the most precious thing you’ve ever received. You may feel disappointment because you wish this product were more representative or age-appropriate. The most difficult thing you may have to learn is to keep a check on your expectations. You’ll soon learn when to push for more and when to put your child’s self-esteem before your own expectations.
7. READ EMOTIONAL SIGNALS! RESPOND TO YOUR CHILD’S DEPENDENCY NEEDS AND ASSERTIVENESS BY KNOWING WHEN YOUR CHILD NEEDS YOUR WARMTH AND WHEN YOUR CHILD NEEDS YOU TO LET HIM GROW.
Reading emotional signals can be tricky even with the typically developing child. It’s even more of a challenge to read emotional signals from children with autism. Yet, many parents overlook that signals are being sent out. Compounding the situation is the guilt that some parents of special needs children also carry around. It can get in the way of responding in a developmentally appropriate manner. At times your child may need to be dependent on you—he may need reassurance or want to be close. At other times your child may be struggling but needs you to be able to tolerate her struggle in order for her to grow. There is a fine line between hovering/overprotection and under-protection. In order to achieve competence in this area, parents may have to examine their own reactions to dependency and autonomy, both to their child and to other people in their environment. Have an open mind about yourself, get lots of reality checks by asking others to provide you with feedback, and be willing to bear a little of your child’s suffering along with her so that she can grow.
8. ADJUST YOUR LEVELS! KEEP YOUR INTERACTIONS AT THE CHILD’S PHYSICAL AND DEVELOPMENTAL LEVEL.
Whenever you talk to your child, give directions, set limits, etc., do it in a way that will be meaningful for your child. Squat down to make sure your child can see your face when you talk to her. Make sure you have the child’s attention before starting to speak: use the words “look at me” to cue your child every time, if you have to. However, remember that eye contact is not an appropriate expectation of some children with autism. Talk to your child at her developmental level. For infants use simple one to two word phrases. Keep your commands simple; use the same words each time you speak them. Whenever possible use visual cues, but watch for signals that your child doesn’t need them anymore. For example, if you give verbal directions and always point, you’ll never know if your child truly understands your language or is relying on your visual cues to assist in comprehension. Gradually “fade out” the visuals when it’s appropriate. It may be helpful to work with your child’s teachers on this. Many children with special needs have problems with sequencing and/or processing auditory and/or verbal information. It is important to learn about your child’s different ways of learning and to respect those when interacting with her. If you approach your child in a manner that is too difficult for her, she may become frustrated, and may feel as if you, and the world, don’t understand how she operates.
9. WAIT! DON’T REPEAT YOUR INSTRUCTIONS OVER AND OVER.
Many children with autism have delays in response time. It takes longer for their brains to register an interaction and then decide how to respond. Learn to wait for your child’s response. Most parents—even parents of typical children—tend to repeat themselves, as if giving an instruction several times will get the child to do it quicker! If your child has a processing delay, as he is working through the instruction you gave him the first time, he gets interrupted by the second and third times you deliver the same instruction. He may get confused and shut down. For children with autism it is important to deliver an instruction and wait—as much as 30 seconds (which can feel like a lifetime!)—before delivering the same instruction. More often than not, you’ll find that your child will respond appropriately, if you give him the time he needs to process what you’ve said. Then, of course, you’ll praise him, tell him how great he is, and he’ll feel like the king of the world!
10. ASK FOR HELP! HOW TO KNOW WHEN TO SEEK PROFESSIONAL HELP.
As you move into the world of special needs, you will find yourself surrounded by professionals and specialists. Use them freely to ask questions, clarify confusions, and get advice. Prior to visiting with a professional, make a list of all your questions. That way you’re sure not to forget anything. Finally, know when to seek professional help for your child by keeping your eyes open to some of the following symptoms/behaviors: sudden, inexplicable mood changes; newly observed regressive behavior (clinging, bedwetting, separation/school anxiety); excessive tantrumming; changes in sleeping or eating patterns; a general lack of motivation or enthusiasm about anything; or any other symptoms/behaviors that don’t “sit well” with you. You know your child better than anyone else; you have good instincts about what’s “normal” for him and what isn’t. Follow your instincts, and don’t be afraid to ask for help. Taking this step can ensure a positive future for both you and your child.
(This article originally appeared in Autism Asperger’s Digest, July-August 2000.)