EMOTIONAL IMPACT ON PARENTS
“I never thought this would happen to me!” is
a very human reaction to any major life events we encounter. We
organize our lives on the premise that we, and those around us,
will live happy, healthy lives and follow a predictable path. Being
told that your child has an Autism Spectrum Disorder is often
the start of a long emotional journey for parents. Parents can go
through many emotions: shock, numbness, anger, depression, or even
relief at finding a reason for inexplicable behaviors.
Parents need to remember that they are experiencing
normal reactions to an abnormal event. Each person’s reaction is
unique and it is important to allow for your partner's delayed reactions,
or reactions that are different to your own. Some parents may repress
their feelings, roll up their sleeves and get on with arranging
interventions for their child. Others might take months to work
through many emotions before they come to terms with a diagnosis.
A key here is understanding - everyone reacts differently and will
need time and support to deal with their emotions. Criticism, blame
and judgments are the last things any parent needs while coming
to terms with their emotions.
Most parents will need time to deal with these
emotions and then choose early
interventions for their child. Remember that a diagnosis is
not a life sentence for a child, and that there are good grounds
for hope. Early
intervention, love and hard work have made a huge difference in
countless lives of people on the autism spectrum.
Click here
to read Temple Grandin's story of growing up with autism to obtain
her PhD and help others.
Grief and loss process
Although we know that autism,
Asperger's
syndrome and other disorders occur frequently, we are usually
caught by surprise when they suddenly change our own lives forever.
All parents hope for the best of possibilities for their children.
A sense of grief and loss are very normal reactions to a diagnosis
of autism or Aspergers syndrome. The losses involved may include
the changed expectations for your child's future, missing career
opportunities if you do a lot of home-based therapies, less freedom
or personal time and loss of financial security if you opt for expensive
early interventions. Coming to terms with these major life events
can see parents moving through some, or possibly all, of these stages
in the grief and loss process.
Loss
Parents often grieve over the loss of the future
they had planned for their child. We all have our ideals and goals
for our children's future, and after a diagnosis we may feel as
though these have been shattered. While some parents may take this
in their stride, for others an intense grief is a normal emotion,
and each person will have their own way of gradually dealing with
it. Ideally, everyone should have an understanding and acceptance
of the grieving process to help them move through this difficult
time.
Signs of grief can include anxiety, depression, guilt, restlessness,
disturbed sleep, a sense of unreality and breathlessness. Our ability
to work through grief is influenced by a number of factors, which
may include how much support is available, our intelligence, personality
type, beliefs and motivation.
Denial
Often the first reaction to loss, denial acts
as a buffer to protect against being overwhelmed by strong emotions
such as anxiety and fear. Without a period of denial, the shock
of an autism or Asperger's syndrome diagnosis could prove too much
for some to endure. An example of denial is not accepting the assessments
or diagnosis by health professionals, even if second and third opinions
have been obtained.
Time is usually one of the best remedies. A good
approach for helping someone work through denial involves providing
a supportive environment for the realization to sink in, not arguing
the point.
Anger
For some parents, anger will be a common emotion.
It may be directed at a God who could allow this to happen, or a
pervasive anger at how your life has been changed. Given that there
is a genetic link with Autism Spectrum Disorders, it could be
blaming a partner for 'defective genes'. Sometimes those nearest
and dearest take the brunt, which can be very difficult when they
are probably coming to terms with the diagnosis as well. Again,
everyone will have their own way to come to terms with this major
life event, and parents must struggle to understand and support
each other.
Bargaining
Bargaining may be an indication that parents is
beginning to realize the extent of how the Autism Spectrum Disorder
will impact on their lives. However, it also indicates that they
are not yet ready to accept it. Bargaining may also be something
that is done secretly, which means that it often goes unnoticed.
The parent may attempt to strike a bargain with God. They will often
make a silent promise to be a better person or go to church/synagogue/temple/mosque
every week for the rest of their lives, in return for a 'normal'
child.
More recognizable signs come in the form of less
drastic comments such as, “I’d give anything to have my life back.”
The supportive family members will continue to be patient and positive
by acknowledging how the person feels, and by feeding positive suggestions
and encouragement about the present and near future.
Depression
As the acceptance of the disorder on their child
sink in, a parent may develop a sense of tremendous loss. Depression
may build to create a sense of hopelessness that will be difficult
to overcome. Families, partners and friends may feel helpless as
they watch the parent sink into deeper depression. Focusing on positive
facts will help, such as the skills and abilities of the child in
question, a loving family, the improvements that early intervention
will bring, and the fact that many children on the autism spectrum
will go on to lead satisfying lives but on their terms, not necessarily
their parents' terms.
The added danger of the depression stage is that
if it continues for too long, there is a risk of the person developing
clinical depression or contemplating suicide. At any hint of this
happening, professional help should be sought.
Acceptance
The acceptance stage is a period of reconciling
the loss and preparing for the future with a renewed sense of well
being. However, while this may be the final stage of grief and loss,
there is still a long way to go. It is common to revisit the earlier
stages at times. For example, parents often feel a sense of loss
at typical milestones such as going to school for the first time,
when developmental delays in their child are brought into sharp
relief. Support groups can be a great help, as parents can talk
about these feelings with other parents who know exactly what this
emotional journey is like.
LACK OF BONDING
It can be difficult for parents to bond to their
children in the usual sense. Children with autism or Aspergers syndrome
often don't show special interest in faces and seem to have tremendous
difficulty learning to engage in everyday human interaction. They
may cry less often because they do not seek parental attention or
ministration. On the other hand, there may be emotional outbursts
with no seeming cause.
Sensory
problems such as hypersensitivity may mean a child does not
like being touched they may not visibly demonstrate their attachment
to family members. These and many other issues can create much frustration,
anger or sadness for parents. The good news is that there are usually
ways to adapt to these issues and find specific ways to interact
with your child. Click here
to read about strategies for physical affection and pleasurable
activities with your child.
facing an unknown future
Anxiety about the future can result in fear, wondering
what level of happiness, development and independence your child
will have as an adult. When there is a chance they may remain dependent
on others permanently, there are natural concerns about what will
happen to an autistic child if the parents can no longer cope or
pass away, even when this is many decades away.
When you are experiencing a major life change,
look for information, support and coping strategies. For example,
parents may initially seek support after a diagnosis of autism,
but often they don't seek help years down the track as the day-to-day
stress of caring for their child gradually wears them down. 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.
Remember your health, positive outlook and energy will be needed
by your child so don't forget to look after yourself with self-care
strategies!
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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