The following excerpt is taken from Chapter
10 of Autistic Spectrum Disorders: Understanding the Diagnosis and Getting
Help by Mitzi Waltz, copyright 2002 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 are a lot of things about raising a child with an autistic spectrum disorder
that teachers, therapists, and doctors don't know much about. The way you live
will change, like it or not.
The good news is that the behaviors that cause these changes usually don't
last forever: the child who this week broke wineglasses just to hear them smash
will probably not be tossing them two years from now. But if you want to avoid
rushing from disaster to disaster, you must have a proactive parenting style.
Avoid conflict, redirect behavior, and always be on the lookout for an
alternative solution to behavior problems.
Here's some advice culled from many parents on handling typical trouble
spots:
If you can figure out what it is about haircuts that drives your child wild,
then remove that particular trigger. You may then be able to get the job done
at a regular barbershop or salon, with modifications. Common problems and
solutions include:
- Sensitivity to barbershop or salon odors. If this is the case, look
for an old-fashioned barbershop that eschews smelly shampoos, or buy a home
haircutting kit. Unscented products are often available, but you may have to
buy them yourself and bring them in, or request them in advance.
-
Sensitivity to the sound of buzzing clippers or snapping scissors. Some
people can tolerate one but not the other. There are also old-fashioned hand
razors for cutting hair, but it's hard to find a barber who can wield one with
precision. Call around! You might also try ear plugs, or a Walkman playing a
favorite tape over headphones. Your barber will happily work around headphones
if it keeps the child in the chair. You might also choose to accept a longer
hairstyle, if grooming is not a problem.
-
Sensory sensitivity in general. Try brushing the head and hair frequently
with a medium-soft hairbrush. This may desensitize the area in time. You may be
able to have your child sit in your lap during a haircut; a tight hug may calm
him down. Again, home haircuts may be your best bet. Make sure you or your
professional uses a neck strip and a cape to keep hair off the skin and
clothes, and clean up with a soft brush and/or a blow dryer set on cool.
Parents whose children are of African descent may have a particularly hard time
with sensory issues when it comes to hair care. Braided styles are the most
convenient when it comes to grooming, but take a long time to achieve and
involve a lot of pulling. Straightening chemicals and pressing are no picnic
either. Short, natural styles may be the easiest to manage.
-
Extreme hyperactivity. One false move in the barber's chair can result in
inadvertent punk-rock 'dos. Many parents swear by cutting hair while the child
is fast asleep. Scissors work best for this operation. Keep a brush and comb
handy, and work slowly. You may want to use a plastic bowl on the head to get
an even length or, for longer styles, hair tape (available at beauty supply
stores and many drugstores or chemists).
It may be an exaggerated fear of being cut, a desire to not lose a part of
oneself, or the metallic clicking of the clippers, but many children with PDDs
hate this grooming task. It's best if kids learn to do it for themselves as
early as possible, although those with fine-motor problems may find it
difficult.
Curved toenail clippers are larger and easier to operate than smaller
fingernail clippers, and can do both jobs passably.
This is another job that parents can do while a child is asleep.
This is a problem area with teenagers more often than it is with young
children, according to parents. You may have to institute a schedule, or even
allow gym-class showers to suffice during the school year.
Even for older kids, tub toys, soap "paints," bubble bath, or
other items may allow you to get them in and out of a warm tub once a week.
Contrary to popular belief, it's not necessary to bathe children daily
unless there are special medical or sanitary reasons to do so. Use a washcloth
to zap any particularly grungy areas daily, and schedule an unavoidable bath
time for one or more days each week. A flexible shower hose can be very useful
for washing the hair of children who are afraid of the big shower.
Some kids who won't go near a bathtub will go swimming, which usually comes
with the added bonus of a mandatory shower. In a pinch, you can see if they'll
run through a lawn sprinkler in a pair of shorts. The novelty of pools and
sprinklers sometimes trumps fear of getting wet.
What do you do with a child who strips off his clothes at every opportunity?
First, you try to find out why. The most common reason is sensory sensitivity,
so first talk to an occupational therapist about instituting a program of
sensory integration therapy.
In the meantime, see what you can do to make staying clothed more
comfortable. Verbal children may be able to explain what they don't like about
wearing clothes. Common problems include chafing waistbands, itchy fabrics,
"new clothes" smells, and annoying tags. Kids who can't stand regular
waistbands can often handle elastic-waist pants and shorts, especially those
made with soft fabrics, such as sweatpants. Others can wear only overalls or
coveralls with ease--and these have the added bonus of being harder to
remove.
For children who wear diapers, the diaper itself may be the problem. Check
for and treat any actual diaper rash (incidentally, diaper rash can be caused
by a yeast infection on the skin, which may indicate a larger problem with
yeast overgrowth. Experiment with different types of cloth diapers, various
brands of disposables, and larger diapers if tightness around the waist and
legs is an issue.
Over the diaper or training pants, sweatpants, overalls (especially the ones
with snaps along the inseam), coveralls, and jumpsuits work well. Some parents
actually stitch down the overall straps each morning, or replace easy-open
fasteners with something more complex. It's possible to open overalls and
coveralls for larger children along the inseam and add unobtrusive snaps or
Velcro for easy toileting without complete clothes removal.
Shirts and dresses that button up the back are also hard to remove.
Some children who tend to remove all their clothing in the bathroom are
simply taking extreme steps to prevent getting their clothes dirty. Careful
work on toileting technique and rewards for good performance can help. Some may
also want to have wet wipes available to improve their after-toilet cleanup,
and thereby avoid dirtying their clothes. Wipes can be purchased in small,
discreet containers that fit well in a purse or backpack.
Catalogs that carry special clothing for children with disabilities. Many
items in these catalogs are especially good for older children who have
toileting problems, or for children with orthopedic impairments in addition to
an ASD.
Many people with sensory problems prefer soft fabrics, such as cotton jersey
or terrycloth, over stiff fabrics like denim. If this is the case with your
child, go shopping with that in mind. It can help to wash new clothing a few
times before wearing it, to remove that stiff feeling as well as any unfamiliar
smells.
And speaking of smells, if an aversion to clothing crops up suddenly, make
sure you haven't just changed your detergent or fabric softener. There may be a
smell or allergy issue going on.
Remove tags from inside of garments as needed.
One solution that will save you money and hassles is purchasing used clothes
instead of new ones. These presoftened garments may already feel "just
right." Again, they may need to be washed a few times to take away any
bothersome scents.
The homes of most young children with autistic-spectrum disorders have a
certain uniformity. After a few incidents of shattered heirlooms and leaning
towers of furniture, accessible areas tend to get a makeover in the direction
of a simple, stripped-down look. Baby gates, locked doors, childproofing
devices, and the like abound.
When shopping for new furniture, pay extra attention to sturdy,
easy-to-clean pieces. You may want to use sticky-back Velcro or foam to secure
a few knick-knacks, but it's best to relegate the family china and precious
ornaments to an inaccessible room or a locked (and hard to overturn or shake)
china cabinet.
Bunk beds and other furnishings that invite acrobatics may not be a good
idea for your child. Then again, they might, if your child tends to be
unresponsive to her environment, but gets excited about climbing up to an upper
bunk or bouncing on a springy mattress.
Likewise, shelves that could be used as steps up to precipitous locations
should be removed or very securely anchored.
Even though he couldn't walk yet, Ian kept using our dining room chairs to
climb up onto the table. Several times he made his way up there in seconds,
knocking items onto the floor and risking a fall of several feet. We solved the
problem by chaining the dining room chairs to the wall, one in each corner. It
made visitors scratch their heads when they saw us do it, but to use the chairs
at the table, we just unhooked them.
Some children seem to have a compulsion to move furniture around, often
using it to build ramps up to places they shouldn't be. Solutions include:
- Removing wheels or plastic sliders from furniture legs
- Choosing very heavy furnishings
- Weighting or blocking the movement of furniture with heavy concrete blocks
hidden beneath stuffed couches and chairs
- Literally attaching furniture to walls or floor with hook-and-eye fasteners
or other hardware
For the early years at least, it's good if you can learn to appreciate
thrift-store chic. You'll feel a lot worse if your child picks holes in a
$1,000 couch than if he damages a $75 sofa from a garage sale. Slipcovers are a
good idea for protecting nice fabrics.
If you want to have one or more nice rooms, either lock them or be prepared
to stand guard at all times. Experienced parents can attest that the latter
option is not worth it--you definitely have better things to do with your days
than worrying about stains on your Persian rugs. There will probably be a time
when you can enjoy some of the finer things again, but now may not be that
time.
Most parents of crawling babies and toddlers take pains to remove hazards
from their reach. You may need to continue and even expand this program with a
child who has an ASD. Funding may be available through government
developmental-delay or mental health departments or private agencies to help
cover the expense of these modifications.
Items that can pose dangers include:
Some children with autistic-spectrum disorders seem to have a Houdini-like ability to
escape their rooms, homes, and yards. This would be an amazing talent if it
didn't cause families so much fear and heartache. Unfortunately, incidents of harm to autistic individuals are depressingly common. In recent years at least three autistic children in the US have died in drowning accidents after escaping from their homes. Another spent several harrowing days alone in the Florida Everglades before being rescued-an experience that the nonverbal child's pictures indicated may have included an encounter with an alligator.
Parents of all these children had spent considerable time and expense to secure their homes-all it took was a second for the child to slip out of view. If escapes are a problem for your family, please consider using the services of a professional security consultant. You may be able to get help from government developmental delay or mental health agencies, or private agencies, to find and even pay for these services. Most people don't wish to turn their homes into fortresses, but in some cases it's the most caring thing you can do. It could very well save a life.
Security options that parents have tried, with varying degress of success, follow:
- Installing key locks or doorknobs with twist-locks facing outward on
bedroom doors can keep a child securely in his room at night. Obviously,
toileting could be a problem with this solution. An intercom or buzzer to
summon parents can solve this problem (as could a chamber pot, for those
willing to try it).
- Latch-style locks, hook-and-eye hardware, or chain-locks installed at the
top of interior doors can limit access to certain rooms, or keep a child in one
room. Of course, these can be foiled easily when a child gets taller, becomes
strong enough to force the door, or figures out how to stand on a chair.
- Double- or triple-bolt security doors can slow down a would-be escapee, and
some types can be unlocked only from the inside with a key. While expensive,
they are tremendously jimmy-proof. Keep the keys well hidden, of course--on
your person, if need be. Fire regulations may require that an exterior-lock key
be secured in a fire-box or stored at the nearest fire station in case of
emergency.
- Windows can be nailed or latched shut.
- Bars can also be placed on windows, as many homeowners in urban areas
already do. Like key locks, these can be a fire hazard. A security consultant,
or perhaps your local fire department, may be able to come up with ideas. Some
types of bars have interior latches.
- Alarms are available that will warn you if a nocturnal roamer is
approaching a door or window. Other types only sound when the door or window is
actually opened. Depending on your child's speed, the latter may not give you
enough response time.
- Obviously, fences and gates are a good idea for backyards. Some types are
less easily scaled than others. Although it might seem cruel, in extreme cases
a child's safety could be secured by using electric fencing (usually this
involves a single "live" wire at the top of a tall fence). Electric
fencing kits are available at some hardware stores or at farm-supply
stores.
- For gates, key locks are more secure than latches
- Electronic locks of various types are another option, including
remote-control and keypad varieties. These can be used for garage doors, gates,
or exterior doors.
In some cities, the local police department is sensitive to the needs and
special problems of the disabled. Officers may be available to provide
information about keeping your child or adult patient safe and secure, whether
he lives in your home, in an institution or group home, or independently in the
community. Some also have special classes to teach self-defense skills to disabled adults.
A few police departments also keep a registry of disabled people whose
behavior could be a hazard to their own safety or whose behavior could be
misinterpreted as threatening. Avail yourself of this service if your child is an escape artist, has behaviors
that could look like drunkenness or drug use to an uninformed observer, uses
threatening words or gestures when afraid, or is extremely trusting of
strangers.
People with ASDs can have a bracelet or necklace made with their home phone
number, an emergency medical contact number, or the phone number of a service
that can inform the caller about their diagnosis. Labels you might want to
have engraved on this item include:
- Nonverbal
- Speech-impaired
- Multiple medications
- Medications include ... (list)
- Epilepsy (or other medical condition)
Members of the general public, and even some safety officials, may not know
the word "autistic." They are even more unlikely to know what
autistic spectrum disorder, pervasive developmental disorder, PDD, or ASD means.
If this article has conjured up visions of a nightmarish life with your
child, please remember that most people with ASDs do not experience severe
problems in the home that cannot be helped with therapeutic, medical, or
educational interventions. However, as experienced parents can tell you, once
one problem behavior is extinguished it invariably seems to be replaced by a
new one. Parents always need to keep on their toes, and it can be exhausting.