THE EMOTIONAL JOURNEY
A CHILD ON THE AUTISM SPECTRUM
Parents of a child on the autism spectrum can experience a range of different feelings, which
surface from time to time. There are no right or wrong feelings.
These feeling are a natural and normal reaction to parenting. All
parents respond to the demands of caring in their own way. Feelings
are always individual and everyone will react differently. Regard
your feelings as signposts. They will tell you when things are not
going well and need your attention.
effects on parents
Some of the feelings that parents often say that
they experience are feeling overwhelmed, guilty, stressed, confused,
angry or depressed by the day-to-day demands of Autism Spectrum Disorders on being a parent.
Parents will often face a lack of understanding
from others. Friends, relatives and extended family may not appreciate
the difficulties you are facing, or may not accept the reality of
how an Autism Spectrum Disorder affects your child. Parents are
often faced by others who believe their child is wilfully disobedient
and simply a bad child. This can particularly be the case in the
community, if the child has an emotional outburst in public.
Frustration can also arise when faced by clumsiness,
lack of emotional response, challenging behaviors, angry outbursts,
or an apparent lack of regard for others by your child. Feeling
frustrated is a normal part of parenting for anyone - the key though
is that your response is based on the early interventions you have
chosen, not based on your feelings.
Anxiety about the future can result in fear, and
wondering what level of happiness, development and independence
your child will have as an adult. When they are likely to remain
dependent, there are concerns about what will happen to an autistic
child if the parents can no longer cope or pass away.
Guilt can be a common feeling. Parents may feel
responsible for the disorder occurring, not wanting to be a parent
any more, losing their temper or being embarrassed by their child.
Parents may particularly feel guilty about taking a break from parenting
by using respite
care, or placing their child in residential care.
Parents may become resentful if they are the sole
parent or a partner does not do their fair share. They may become
frustrated with their child if they regularly face challenging
behaviors, angry outbursts, lack of communication or other signs
of developmental delays. Parents may become angry from lack of support
when friends don't make contact anymore, support services don't
provide enough help and the focus always is on their child.
Sadness and loss
A sense of loss is often pervasive after a child
receives a diagnosis
of an Autism Spectrum Disorder. There is the loss of the exact
life you had planned for your child, and often the loss of the life
ahead you had planned for yourself. This grief can emerge at unexpected
times - birthdays, the first day at school, special holidays. These
feelings are normal from time to time. The key is to talk with your
partner or other parents about it and maintain a positive outlook
in the long run.
Grief is the emotional pain that comes about as a result of a loss,
or a number of losses. It can be one of the strongest feelings experienced
by parents and often causes great distress. Grief can go unrecognized
because there has been no actual death of a child . Recognizing
your grief, and talking to someone about how you are feeling can
help. If feelings of sadness persist for a long time, or affect
your life to a great extent, contact your family doctor or community
Stress itself is not a negative phenomenon. In
fact, we need some stress in our lives to feel motivated, a sense
of achievement and stimulation. It is typically the day-to-day stresses
which take a greater toll on a person’s physical and mental health
because people are less aware of the cumulative effects.
Stress is a part of our daily lives, but too much
stress can lead to physical and emotional exhaustion. Parenting
an autistic child can mean being cut off from others and facing
high stress over a very long period of time. Stress may bring physical
symptoms such as headaches, or difficulty sleeping. Some people
become very emotional or anxious. Others report feeling persistently
tired and chronically unwell. Because we can’t always do something
about the causes of stress in our lives, it’s important to learn
to recognize stress and to try new ways of coping with it.
Physical signs of stress may include a lowered
immune system, breathing difficulties, fatigue, sleep disturbance
and muscular tension. Carers may also find themselves feeling out
of touch with reality, forgetful, not looking after themselves,
crying easily and not eating properly.
Sometimes being a parent can feel like an endless
grind. Over time, you can stop feeling angry or sad about your situation
and instead just feel numb. Even happy times don't seem to lift
you, and the simplest tasks seem to take too much energy. You may
find you are sleeping too much, or waking early or during the night.
You might feel worthless or agitated most of the time, and have
difficulty making decisions. These changes may be signs that you
are suffering from depression.
Depression is a serious illness but is often overlooked. It is common
and it is treatable. Talk to your doctor, who will help you find
the treatment that works best for you.
How can parents deal with difficult feelings?
Feelings can sometimes become overwhelming and
lead you to act in ways you don't like. It can become hard to think
clearly about important decisions. Just as feelings are individual,
so are ways of dealing with them. However, there is a way to deal
with difficult feelings that many parents say is extremely helpful
– talking to someone. Talking about problems can help, either to
family and friends, to other parents in a support group, or to a
One possibility is to join a support group or get on the Internet
and head for an autism or Asperger's forum.
You can meet other parents 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 don't
understand the stresses of caring for your child. People in the
support group or forum will understand completely!
Support groups bring together parents in local areas, sometimes
under the guidance of a facilitator who is experienced in supporting
parents. Often other parents are invited to present information
and training. Your autism or Asperger's association can help put
you in touch with parent support groups in your area.
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 caring. Counseling can
involve just you and the counselor, either face-to-face or over
the telephone, so it’s important that you feel comfortable with
the counselor you choose. Anything that is said is completely confidential,
so it’s a good chance to talk about those things that you may feel
you can’t raise with family or friends.
Counseling usually involves a limited number of sessions but can
vary according to your needs. Some Counseling services are free.
Private counselors charge a fee, although many are willing to negotiate
their costs. Your local doctor, community health center, council
or service provider may be able to assist.
Planning for breaks and health
You cannot care constantly without a break. It
can be difficult, but ask for help. Ask family and friends and respite
care services, but make sure the breaks are regular and frequent.
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. Trying new vegetables or fruit, eating at regular times
and looking for new recipes are good ways of making eating well
Planning to keep friendships & interests
Try to relax and enjoy yourself. Maintain an identity
of your own separate from being the parent of a child with autism
or Asperger's syndrome. Keep your links to the world. Absorbing
interests, having fun and relaxation are all good for your physical
and mental health.
IMPACT OF AUTISM ON BROTHERS & SISTERS
Because siblings are such a large part of each
other’s lives, it is not surprising that when one has autism
syndrome, the others can be greatly affected — sometimes for
Brothers and sisters often share a lifelong relationship. They greatly
influence one another's behavior, personality and identity. The
emotional bond that exists is often characterized by such dynamics
as love, hate, jealousy, rivalry, companionship, solidarity, loyalty,
competition, and affection. Although the onset of an Autism Spectrum Disorder is different for every child, there are some common experiences
that siblings are likely to feel.
How siblings of an autistic child may feel
Siblings may feel jealous, resentful or ignored
due to the extra attention an autistic child may need. They may
experience difficulties adjusting to the behavior
style of the autistic child. In some cases, they will frequently
be worried and become protective even if they are younger chronologically.
Parents should encourage their children to discuss these feelings
with them. In some cases, children may feel more comfortable talking
to a family friend or extended family member. For those young people
who do not wish to talk to anyone, encourage them to write down
their feelings, by either writing themselves a letter, or writing
in a journal or diary.
Siblings can be frustrated, stressed, angry, and
embarrassed about their brother or sisters’ behavior at times. At
the same time however, they may feel guilty and ashamed for these
feelings. Siblings should be given permission to feel upset and
to talk through their concerns and frustrations. In the long term,
a positive outcome is that siblings often have an increased understanding
of autism or Aspergers syndrome, and become more tolerant, responsible
and mature. They may also be able to better accept their situation
and realize their own special worth and set and accomplish their
own life goals.
Strategies for assisting siblings of autistic children
The type of support given to siblings will often
depend on such things as the age of the sibling, their friendship
networks, familial support and their living environment. However,
there are many complex processes impacting on how young people react
to their brother or sister's Autism Spectrum Disorder. When assisting
siblings one must keep in mind that each person should be listened
to carefully and their individual experiences and needs assessed.
Brothers and sisters can greatly benefit from
having the effects of autism or Aspergers explained. If they are
old enough, they can help in adapting their communication and behavior
in line with strategies that the parents use. Your autism association
may have age-specific material for siblings to help them understand
Autism Spectrum Disorders.
Acknowledge contributions of siblings
It is very important that parents acknowledge
the difficulties and sacrifices that siblings often make when their
brother or sister has an Autism Spectrum Disorder. Many siblings
put on a brave face and attempt to be strong for the entire family.
No matter how unaffected siblings may appear, however, it is important
that their contributions, trials and achievements are recognized.
Acknowledging their difficulties, responsibilities and understanding
is an essential ingredient in supporting siblings. It is also important
that siblings are not always expected to provide constant time,
attention or care to their brother or sister with autism. Siblings
sometimes need time to themselves or to be with their friends alone
for time out.
Respite and time-out with parents
Siblings still need some time out with their parents
alone. They need to know they are still special, even if they don't
have much time together. Do not assume that siblings know this,
sometimes they need a reminder. Younger children sometimes display
changes in their behavior when they fail to understand the inequity
of time - especially when their brother or sister gets so much attention.
Encourage the siblings to go out with friends on their own and to
continue their sport, activities, school, hobbies and goals that
to read a fact sheet on self-care strategies for parents.
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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