and Asperger's syndrome
simply complicate what is already the tough job of being a parent.
Parenting is similar to running a marathon; you need to pace yourself
for the long term. These self-care strategies for parents can help
you to look after yourself, so you can look after your child better.
Dealing with stress
Parents with children on the autism spectrum usually experience greater stress than do parents of
both children with other disabilities. They face the risk of psychological
disorders, poor health and relationship breakdown and need to learn
strategies for reducing the impact of stress. Parents need regular
exercise, a balanced diet, regular sleep and rest and relaxation
techniques. Other useful strategies include problem-solving on major
issues, investigating and altering irrational beliefs, stress-reducing
self-talk and meditation.
A balanced life can go a long way to reducing
stress. To last the long haul, parents need to balance their needs
along with those of their child, developing a lifestyle that balances
caring with family, hobbies, socializing and work. Time management,
goal setting and organization can help to reduce stressors, create
time for enjoyable activities and maintain social support.
When parenting an autistic child is very demanding,
many parents find that surviving is a matter of taking time out
for themselves. Respite
care is an essential part of the overall support that families
may need. It can be provided in the home or in a variety of out-of-home
settings. Since not all families have the same needs, respite care
is usually flexible to fit in with a family's requirements. It might
be for a few hours, a day or longer, and you don't have to be a
full time carer to access services. Make sure you have a regular
schedule of breaks using respite care.
Dealing with feelings
Guilt, anger, resentment, fear, stress, anxiety,
depression and grief can be part of the emotional
journey faced by parents of a child on the autism spectrum.
With time, the worst of these feelings will go. It is normal to
feel as if you are going crazy at times, and it does not help to
try to suppress or deny what you are feeling. There is a reason
you are having them, and they will lessen when they are ready.
One common emotion that family members experience
is denial. They refuse to acknowledge that things are as bad as
they are. They believe that they are handling things just fine,
and that everything will be back to normal soon. Although this does
not represent reality, it can be a healthy, short-term way for some
people to cope. In a sense, denial gives those experiencing it a
“vacation” from the constant turmoil they are feeling.
Denial can be a problem, however, if the family
member has unrealistic expectations about recovery. The best way
to deal with your feelings is to accept them, but make sure you
can talk about your feelings with someone who understands, whether
it is a family member, friend, counselor or support group.
Self-advocacy for parents of autistic children
At some point, carers will find themselves unhappy
with the level of support from a particular hospital, health professional,
school, therapist or welfare association. You have the right to
expect appropriate support or treatment, and should be assertive
in claiming what you want: in effect you will need to be an advocate
for your child. There are grievance procedures and appeal processes
in most cases. Your autism association may be able to assist, or
link you with advocacy organizations.
Be easy on yourself
Avoid the superhero attitude! You may try to be
the model parent, with complete patience, courage, understanding,
support and sacrifice. Be prepared for times when you feel like
quitting, yelling, leaving and breaking down. The parenting role
is similar to running a marathon – you need to pace yourself for
the long haul. Trying too hard in the early stages may mean you
lose all your energy further down the track when your parenting
skills may be needed even more.
autism support groups for parents
Why join a support group? You can meet others
in a similar position, have a break, get information and get support
from others who know what your situation is like. Sharing ideas,
feelings, worries, information and problems can help you feel less
isolated. Sometimes family and friends won’t understand the difficulties
of parenting a child with autism. People in the support group will
understand exactly what you are going through.
Support groups bring together carers in local areas, sometimes under
the guidance of a facilitator who is experienced in supporting carers.
Often other carers or workers are invited to present information
and training. Your autism association can help put you in touch
with carer support groups in your area. If there are none, you can
always start a support
Counseling involves talking to someone who understands
and can work with you to give you the encouragement, support and
ideas to improve your situation. It can be a way to assist with
the many changes in your relationships and roles, as well as dealing
with the strong feelings associated with parenting. Your local autism
association can put you in touch with support groups or organizations.
who can provide counseling.
PLanning for health
Regular exercise, rest and nutritious food are
all necessary in order to withstand stress. Try to plan your day
so you get all three. Walking, swimming, yoga, gardening or dancing
are good ways to get some gentle exercise. Learn to relax by listening
to pleasant music, meditating or doing specific relaxation exercises
can help you sleep better. Try new vegetables or fruit, eating at
regular times and looking for new recipes are good ways of making
eating well easier. Make sure you laugh regularly, even if you need
to get out your favorite comedies on DVD.
Planning to keep friends & outside interests
Try to relax and enjoy yourself. Maintain an identity
of your own separate from that of being a parent. Keep your links
to the world outside issues revolving around autism or Aspergers
syndrome. Absorbing interests, having fun and relaxation are all
good for your physical and mental health.
Be aware that some friends may tire of you talking about the hassles
of parenting an autistic child. You may become resentful and lose
friends by expecting them to provide more support than they are
willing to give. Try to be understanding in these situations - you
may be best sharing your ordeal with other parents of autistic children
who know what you are going through.
Don't expect too much from friends. It can seem pointless talking
about their everyday events when you are facing such a demanding
battle, but use these opportunities to keep your friendships going
and a chance to leave autism-related issues behind for a while.
Remember, if the situations were reversed, you would probably not
want to continually here about the problems of a disorder you know
almost nothing about. You'll need your friendships as support for
the long run so try to chat about 'normal things' as you used to
See the Family
and Carer issues section of the website for more information.
Click here for the full
range of Asperger's and autism fact sheets at www.autism-help.org
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