|
Finding out that your child has autism is not the end of the world, nor is
it the end of your family. "True, having a child with autism can be very stressful
and can strain families to the limit at times, but there are ways to cope. Your
family will face the challenge of coping in its own way, but right from the
start you should know that it can be done. Thousands of families have
proved that." - Michael D. Powers author of "Children with Autism". (emphasis
added)
Indeed, you are not alone in your journey. Across the world, families with
children who have some form of disability, often share common experiences and
reactions. This should give you some assurance. In "Diagnosis - Reaction in
Families" Brenda Nally lists 6 common experiences (by families) across disabilites:
Reactions by families across disabilities
1. Adjustment - there will almost always be a process of adjustment
to meet the needs of a special child. For the parents, this may mean the postponement
of certain career/ educational plans to devote time to the particularly dependent
child.
2. Changing Values - unimagined strengths and resources among family
members may be drawn out by the circumstances; the experience may cause family
members to re-examine their values (especially the materialistic ones). For
children and adults, it can certainly be valuable lesson in 'celebrating differences
rather than fearing it', as the family learns to love the special child unconditionally.
3. A sense of loss - there may be a generalised sense of loss as the
family realises that the child's future life will be filled with uncertainty
and certain difficulty. Parents might also experience a sense of aloneness and
isolation if faced with insensitivity and prejudice in society. Sometimes, friends
or relatives may insist that there is nothing wrong with the child and that
all problems are due to the parents' methods of child-rearing and dealing with
difficult behaviour. In such cases, parents are advised to "keep cool, calm
and dignified, provide information but refuse to be drawn into arguments and,
if there is no other way of changing attitudes, to see as little as possible
of those who are unsympathetic." - Lorna Wing, "The Autistic Spectrum - A Guide
for Parents and Professionals".
4. Loss of independence - all parents expect their children to gain
independence after childhood and adolescence. However, it must be acknowledged
that some children with a disability may always remain dependent even into adulthood.
(Hence, the aim is to help the child achieve as much independence as possible.)
5. Comparitive neglect of other family relationships - in the process
of meeting the special child's needs, there is always the danger of neglecting
one own needs and relationships. It is always important to note that the child
is a part of the family, not the centre of it. There must be a
balance of roles, among other things. Raising a child should not become a choice
between him/ her and the family. Should the family break down as a result, everyone
suffers, especially the special child. (This is discussed in depth later.)
6. Lack of respite - it is sometimes difficult for parents to find an
external care-giver who can understand and cope with their special child's complex
needs. This can limit their time alone and time together severely, leading to
exhaustion. In "The Autistic Spectrum - A Guide for Parents and Professionals",
Lorna Wing offers this suggestion: "The local Autistic Society may have a scheme
for baby-sitting. If not, then the idea can be suggested and explored by interested
members. Such schemes are always the result of individual initiatives." In addition,
supportive and loving relatives can be a source of invaluable child-care help.
Some reactions specific to Autism
1. Confusion and anxiety over the complexity of autism - ASD is a complex
and perplexing condition which can make parents fearful and frustrated. Meeting
other parents through local autistic societies can be an excellent source of
emotional and practical support.
2. Misunderstanding/ Lack of acceptance of disability from others -
this is largely due to 'normal' appearance of the child with ASD, which is why
it is often called an 'invisible disability'. Blame may be placed on the parents
when the child is seemingly intentionally naughty or difficult. Parents who
are able to overcome the feeling of guilt, telling themselves, "It's their problem/
ignorance, not ours" will find tremendous release from this source of stress.
3. Difficulties about the genetic link from other family members - discussions
about the genetic traits in the family can be interesting - if held in the spirit
of intellectual enquiry. It must be remembered that it is pointless to waste
time and energy in blaming either side of the family for the child's problems.
The point is to help the child to find a way of life, in which s/he can be as
happy and content as possible. However, parents might want to seek genetic counselling
to consider the implications of having future children.
4. Loss of flexibility - Children with ASD often need structure and
consistency to help them make sense of the confusing world. Hence, the setting
of routines, schedules and deadlines within the home will help make the environment
more predictable and managable for the child. For example, daily during mealtimes,
the child with ASD may need to follow an rigid and identical routine before
s/he is willing to eat. Siblings of the child need to understand that the child
is not simply being difficult or naughty. Somehow, the family must accomodate
the child's ritualistic behaviour, but not allow it to dominate family life.
|