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Having a child or a young person with a disability either seen or unseen, is a traumatic ongoing experience
for most parents. You never know what to expect on a daily bases or know when the condition is going to
trigger or why.
As a parent living with a child with Autism, you are faced with a life sentence of which you have to adapt
to an ethos of living by the day.
One of the common feelings parents in these circumstances face, is the feeling of isolation and criticism
from others in the community and the society as a whole, for your child/children's challenging or commonly
referred to as bad behavior. That society seems to have a zero tolerance approach to by others.
And those who are usually not educated enough about these disabilities will refer to your child's behavior
as your bad parenting skills.
Most parents are usually in denial, and may appear to the outside world as living or going on with their
normal lives, "coping and getting on with it".
They may normally deal with the issues but will refuse to be confronted with any discussion about the
future. This does not necessarily mean that they do not know what the future holds for the offspring/s,
but most parents prefer to deal with the situation gradually.
Parents want to be given enough time to discuss their child and any notion of their child's future taking
on the attitude of "when they are ready to talk about their emotions with someone they will".
This should not however be confused with the definite idea that they will never discuss their emotions on
the subject, they just may however need more time than those who are not faced with these daily conditions.
We must always remember that for a lot of these parents in their initial quest for guidance, knowledge and
support on or for their child they were faced with many tribulations sometimes from the
very "professional/s" who claim to have more knowledge on their child’s disability.
In saying this we must not begin to believe that there are no qualified professionals to help support
these childern/young person's condition, and we must also not begin to believe that there are no other
organisations out there that are not willing to give enough support to listen to parents problems, as
to say this would not in any way be true.
What needs to be done is for more of these organisations to be aware of one another and work in
partnership with one another. We need for more parents to voice their opinions even more loudly and more
visually to those who can provide them with the support they need.
We need for boroughs and governments to do more than just provide social inclusions that act more like
social isolation, so that their future is one that consists of these disabilities as the norm instead
of the taboo.
And we "need" for parents to be included in policies made that clearly have dominant effects on these
children’s day to day lives.
WHAT IS AUTISM (ASD) / ASPERGER SYNDROME / DYSPRAXIA OR UNSEEN DISABILITY
History & the understanding of autism to a parent
Leo Kanner was the first to come up with the name AUTISM in 1943 after his observation of a small group
of children with the same condition and ASPERGER SYNDROME. Based on the description by Han Asperger in 1944.
This condition is a complex developmental anomaly of the brain. Young/old affected by this condition
have a range of impairments that makes it difficult with social interaction with others or social
relationship. Most people with autism have PATCH profile of skills and disabilities; they may be very
capable in some areas but not in others.
Difficulty in developing imagination also has set/rigid ways of playing with others/peers
Difficulty in communication, facial expression and gestures
Problems with sensory responses. Lack of understanding of the world around them.
The cause of the condition unknown.
About 500,000 families are affected by this condition in the UK. Research by National Autistic Society.
Asperger Syndrome
Asperger Syndrome comes under the umbrella of Autisms other term use, as HIGH FUNCTIONING AUTISM has a Trait of
impairments, same as described with Autism but they have average or above average level of intelligence.
Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder named for a Viennese physician, Hans
Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal
intelligence and language development, but who also seemed to exhibit autistic-like behaviors and marked
deficiencies in social and communication skills. In spite of the publication of his paper in the 1940's, it
wasn't until 1994 that Asperger Syndrome was added to the DSM IV and only in the past few years has AS been
recognized by professionals and parents.
Dyspraxia
This is an impairment of the organization of movement (Physical activities hard to learn) or immaturity, associate
with problems with language, perception and thought.
This condition is common in both young people and adults; they tend to have poor understanding of messages and
relating the messages to action.
The recent research suggests that the condition is a neuron development in the brain rather than brain damage.
Autism
Autism is a lifelong developmental disability which affects people mainly in three different ways at differing
levels. Some people are able to operate relatively independently whereas others require constant family and
specialist support. The particular difficulties relate to:
- social communication – literal interpretation of language, lack of understanding of body language, tone
of voice, sometimes lack of speech
- social interaction - difficulty recognizing or understanding other people's emotions and feelings, often
isolated
- social imagination – lack of anticipation of danger, often needs familiarity and routine
Autism is often described as a "hidden" affliction as those suffering do not look disabled so parents are often
looked down on and are often criticized and looked upon as if they do not "control" their child. There is difficulty
in finding appropriate education support therefore a disproportionate number of children with autism are excluded
from school.
Asperger syndrome is sometimes more difficult to diagnose as people afflicted usually do not have learning
disabilities and have highly developed language skills. In some ways this makes working with them more difficult
as it is hard to access and allocate appropriate support.
Sometimes people with autism are gifted in a particular area such as mathematics, art or music and this is
often obsessive. Frustration or other triggers can lead to violent or destructive behavior.
Other conditions are sometimes associated with autism. These may include attention deficit hyperactivity
disorder (ADHD), or learning difficulties such as dyslexia and dyspraxia.
ADHD
Approx. 1.7 per cent of the UK's population, mostly children, have ADD or ADHD. Boys are more likely to be
affected.
Attention deficit hyperactivity disorder (ADHD) and attention deficit disorder (ADD) relate to people who
have difficulties with concentration including excessive inattentiveness, impulsiveness, restlessness,
hyperactivity.
This is usually an affliction of children and many will "grow out" of the disorder.
Common features include sustained:
- Failure to pay close attention to detail leading to careless errors
- Failure to finish tasks or sustain attention in play activities
- Not listening to what is said
- Failure to follow through instructions or to finish activities
- Lack of organisation e.g. getting dressed
- Avoiding tasks that require sustained mental effort
- Losing of necessary items e.g. pencils, books or toys
- Ease of distraction
- Forgetfulness
Young people suffering from ADHD will often
- Run around or excessively climb over things
- Be excessively noisy in play or find quiet leisure activities difficult
- Fidgets with hands or feet, squirms on seat or walks round at inappropriate times
- Shouts out in class, interrupts, intrudes, does not take turns or queues
- Talks excessively without appropriate response to social restraint
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