Parenting: Disciplining a Child with PDD
The following excerpt is taken from Chapter
of Pervasive Developmental Disorders: Finding a Diagnosis and Getting
Help by Mitzi Waltz, copyright 1999 by O'Reilly &
Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
There's a parable about accepting children with disabilities that regularly
makes the rounds of support-group newsletters and Internet discussion groups.
Written by Emily Perl Kingsley, "Welcome to Holland" (Kingsley, 1987) talks
about the experience of planning a trip to Italy but accidentally ending up in
Holland, which doesn't have the Colosseum or Michelangelo's David, but does
have lovely tulips and Rembrandt. Holland is different, but it's good in its
own way--just like your child with a disability.
While many parents have found this fable comforting, others feel patronized by
well-meaning advice and reading material that encourages them to simply accept
I look at that "Welcome to Holland" pap piece and think, "What the hell do they
mean? Try `Welcome to Bosnia'!" --Krista, mother of seven-year-old Joshua
When you are encouraged to accept your lot, even to see it as a gift, it can
make you think you don't have the right to be mad--but you do. No one deserves
to have these disorders, and no one deserves to have their lives turned upside
down by caring for someone else who does. On one level, you do have to accept
the situation. On another, you cannot, and must not if you are to have the
energy and determination to help your child.
You may feel surprisingly angry if you're told that God or nature has chosen
you for the "special" duty of parenting a child with a disability. People
usually mean these words as a compliment, but they can add to internal feelings
of being trapped in a role you never asked for, and to feelings of inadequacy.
And as Krista's comments above indicate, a PDD diagnosis can turn family life
into a battlefield. Looking at the carnage through rose-colored glasses isn't
always an option.
Mary Callahan's book Fighting for Tony is a fine portrait of how a PDD
diagnosis can affect a family. Whether you agree with Callahan's theories about
the causes of her son's autistic behavior or not, her description of a
marriage's disintegration under pressure will be sadly familiar to many parents
of children with PDDs. As her son's mysterious illness pitched the Callahans
into repeated battles with doctors, the school system, and each other, a solid
and loving relationship was destroyed by the pressure. This true story has a
happy ending--not only did Callahan "recover" her son, she and her husband
eventually recovered their marriage.
Another poignant portrait of autism's effects on the family is Family
Pictures, a novel by Sue Miller. Later made into a very affecting TV movie,
Family Pictures chronicles the dramatic impact of an autistic son on his
affluent Northeastern family.
Both Callahan's real-life account and its fictional counterpart demonstrate the
same point: the word "pervasive" in pervasive developmental disorders describes
the impact of these conditions on the people around the patient, as well as on
the patient himself.
My marriage has definitely suffered, also my relationship with my older
daughters. I find it difficult to keep it all in perspective. --Lesley, mother
of three-year-old Danielle (diagnosed PDD-NOS)
Every family is different, but there are a few problems that many have in
common. These include:
Perhaps the number one problem in any family with children is differences of
opinion about what constitutes appropriate discipline. These are only
compounded when a child has a neuropsychiatric disability. The behavior
problems are bigger, and solving them is more difficult. Conflicts between
parents become more likely.
- Differences over discipline
- Inability to handle problem behaviors
- Withdrawal by one parent, or by one or more siblings
- Overinvolvement by one parent
- "Genetic blame"
- Parental neuropsychiatric problems
- Breakdown of extended family relationships
- Community isolation
- Financial problems related to disability
- Sibling rivalry compounded by behavior problems
Uncontrollable tantrums or rages in an eight-year-old, self-injurious behavior,
assaultive or destructive behavior, and communication problems between parent
and nonverbal child were not dealt with by Dr. Benjamin Spock or Penelope
Leach. Grandparents and friends haven't a clue. The usual strategies may not
work at all.
In particular, spanking and other forms of corporal punishment often seem to
feed the parent-child conflagration. For one thing, autistic-spectrum people
often have unusual perceptions of pain. There's a danger that getting through
to the child with a smack on the behind won't work, and parents may then be
tempted to go too far with physical punishment. In addition, hitting can
reinforce a child's assaultive or self-injurious behaviors. For these reasons,
parents are strongly advised by almost every expert in autistic-spectrum
disorders to find alternative methods of discipline.
And therein lies the rub.
With "normal" children, rules, reasoning, brief time-outs, and an occasional
docked allowance will usually suffice. What do you do when the child can't
follow your reasoning or puts up a wall that you can't get through? This is a
struggle for any parent, and when two parents are at odds it only gets worse.
It's very common for one partner to have a lower tolerance threshold, or a
smaller repertoire of effective, nonviolent discipline strategies. This is
where the arguments begin. One parent lets a behavior go, while the other is
hugely annoyed by it and eventually blows up. One parent spanks, and the other
rushes to comfort the child. One parent gives a time-out, and the other adds a
second punishment because that doesn't seem like enough.
My husband and I had trouble for several years because he did not want to admit
that our son had a problem. It was just too much for him to face. He felt that
strict discipline would overcome the hyperactivity and the short attention
span. Finally, after my son regressed to the point that he didn't want to be
touched and couldn't find his way around, [my husband] came to the party.
--Kim, mother of seven-year-old Brad (diagnosed atypical PDD, cognitive
Differences over discipline are often deep-seated. Most of what we know about
raising well-behaved children we learned from our parents, for better or for
worse. Chances are that not only were your parents imperfect disciplinarians at
best, but also weren't raising children with PDDs. Techniques that worked on
you as a youngster may be totally inappropriate for your child.
The first key to resolving discipline disagreements is making a compact between
parents. Behavior experts who have worked with families affected by a wide
variety of neuropsychiatric disorders agree that this compact should include,
at minimum, the following points:
- The best discipline is positive, so parents must rely on providing
incentives for desirable behavior before using punishment to control
undesirable behavior. The "token economy" schemes used in many classrooms can
be successfully adapted for home use, for example. Parents should also learn
about alternative strategies for addressing the roots of problem behavior, such
as relaxation techniques.
- Punishment must fit the crime. Whenever possible, the only punishment
should be experiencing the natural and logical consequences of an undesirable
action. For example, if Joe bites his friend Jane, Jane will go home. If Joe
pours his juice on the table, Joe has to clean it up and does not get another
glass of juice.
- Parents must agree on basic guidelines for stopping undesirable behavior,
such as whether physical punishment is ever acceptable, what form discipline
will take, and under what circumstances it will be meted out.
- If physical punishment is ever to be used, it should be a last resort and
used in a controlled fashion.
- Accordingly, parents must come up with a common set of effective
disciplinary measures for undesirable behavior. These may include loss of
allowance or privileges, addition of chores or other responsibilities,
time-outs, and, for older children, grounding.
- Parents must agree to avoid calling the child (or each other) hurtful names
or using other verbal abuse.
- Parents need to support each other in the effort to remain calm during
behavior problems. If a parent is losing control, he or she should feel free to
turn the situation over to the other partner long enough to take a "parental
- Parents must not, however, give one partner the permanent role of
disciplinarian. The old "wait 'til Daddy gets home" scenario lets one parent
off the hook, and encourages children to be fearful and manipulative. For
children with neurological problems, delayed discipline can be particularly
- If an undesirable behavior happens repeatedly, and neither incentives nor
disincentives seem to curb it, parents should agree to look closer for hidden
causes. Behavior analysis techniques can be very useful in this regard.
- Most importantly, parents must present a united front, even when they don't
actually agree. Arguments over discipline should not occur in front of the
child. If Mom thinks Joe needs a time-out for throwing blocks, but Dad thinks a
reprimand is sufficient, Dad can let her know how he feels while Joe is in
time-out. Next time it happens, they'll be in full agreement about the proper
consequence for throwing things.
Parents do need to remember that people with PDDs may respond to discipline
unevenly. A child who has rages that arise out of seizures or other
neurological events may not be able to gain self-control at these times, but
can do so when the behavior is a garden-variety temper tantrum. People with
PDDs may perform acts compulsively and be unable to control these actions by
force of will alone. Interventions may have to include protective devices,
security measures, and medication.
The bottom line is that you know your child. To be effective, the discipline
plan you create must be individualized, and must be flexible enough to take
into account the child's mental and neurological realities.
These skills do not come naturally, so the second key to defusing the behavior
time bomb is finding expert assistance. Behavior modification professionals,
ABA practitioners, family therapists who are knowledgeable about
neuropsychiatric disorders, and others can help. Usually the professional
should observe the child interacting with parents and siblings at home,
preferably more than once.
These professionals can help with both an overall behavior plan, much like
those used in schools and with specific suggestions. The best experts can be
available on a long-term basis, providing parents with someone to call when
they run out of ideas or patience. A good family therapist can be of particular
help when parents do not agree about appropriate rules and discipline.
Your special education case manager, government mental health or developmental
disabilities department, psychiatrist, or ABA provider should be able to help
you find professional help for behavior management.
For most children, time-outs are an effective way to gain the child's
attention, make it clear that a behavior is undesirable, and attach a
consequence to a behavior that doesn't have built-in natural and logical
consequences. For some children with PDDs, they are very effective.
For others, they are not. Children who are severely socially withdrawn may
actually find time-outs to be reinforcing. For these children, ABA and behavior
modification techniques are a better choice.
You may want to modify your time-out procedure to take your child's special
needs into account. For children who have trouble with time concepts, for
example, a timer or stopwatch can help. Children who are often given time-outs
to deal with frustrated, aggressive behavior may need a space with pillows or
foam bats they can safely bang around. Some families have cleared out a closet
for a time-out space, removing the clothes bar and any other potentially
dangerous items and adding a punching bag, beanbag chair, and other items that
can help a child work out angry feelings.
Parenting classes may or may not be useful. Parent Effectiveness Training,
Positive Parenting, and similar courses are designed for children whose
responses fit the predictable pattern. When a child has PDD, his response to a
particular incentive or disciplinary measure may not fit the mold. For example,
a child may not be able to grasp the concept of natural and logical
consequences until a much later age than expected. As noted earlier, corporal
punishment may be ineffective or counterproductive. Reasoning with a
grade-school child who has a PDD may be a useless exercise. The incentives that
motivate "normal" children may be of little interest.
My son's day treatment center required parents to attend a weekly
skill-building group. I'm sure it was valuable for some of the families, but it
just gave me a regular reminder of how far out of the mainstream we were. When
I asked my first question, it was about how to handle a child in an
out-of-control rage. The teacher asked me to explain what I meant. When I
started talking about a child who turns bright red, falls to the floor, bites
anything in reach, and can't be calmed for as long as two hours, she blanched
and said, "Gee, I don't know ? maybe you should ask a psychiatrist." The
psychiatrist, of course, had suggested that I bring up the issue in my
Sometimes parenting classes geared to the special needs of families with
disabled children are available through local hospitals, Early Intervention or
special education programs, or disability support groups. Depending on the
instructor's skill level and approach, these can be very valuable.
What do you do when your child has a behavior that you (or your partner) simply
can't handle? Echolalia, weird noises, constant humming, headbanging, pestering
the pets--whatever it is that makes you flip your lid, your child with PDD-NOS
or atypical PDD will probably find it.
We never have gotten a good answer. We definitely need parenting skills that
are different from what worked with our daughter. Who can tell us what we
should be doing?
If it appears to be something neurological that you'll just have to live with
for a while, try dealing with your reaction rather than the behavior. Try ear
plugs, a Walkman with headphones, asking your partner if you can go for a walk
for fifteen minutes
whatever it takes to keep you sane. Likewise, if
your partner is the one being driven up the wall, be willing to take over for a
while and let him avoid the annoyance.
Alternatively, change the situation to avoid the annoying behavior. If your
child's fine-motor problems lead to atrocious eating habits that turn your
stomach, have a kids' table and an adults' table at dinnertime, or two
different dinner times. Or serve the child foods that are harder to make a
horrible mess with. Try relaxing your standards a bit--Martha Stewart does not
have an autistic-spectrum child at home, so you really shouldn't try to compete
with her in the creative housekeeping department. Get a sitter instead of
taking the child with a PDD to a fancy restaurant, or choose restaurants where
being messy is no big deal.
Be creative in your solutions, and don't worry about whether your family's way
of coping is "normal" or not. Go grocery shopping at midnight, order clothes
from catalogs, put a lock on the refrigerator, set up a cot in your room for
your child who has night terrors. If it works for you and harms no one, it's
Our son is almost eight, and he still sleeps in our bed almost every night. I
brought this up hesitantly in my email chat group, and found out that we are
far from the only parents who allow this. He seems to need the extra contact,
and he sleeps through the night consistently.
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