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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 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 behaviour. That society seems to have a zero tolerance approach to by
others and for what; from those who are not educated enough about these disabilities refer to 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" 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 child/young person’s condition, and we must also not begin to believe that there are no other
organisations out there that are not and willing to give enough and 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 this 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 than 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 Autism other term use as HIGH FUNCTIONING AUTISM has a
Triad of impairments same as described with Autism but they have average or above average level of
intelligence.
Dyspraxia
This is an impairment of the organisation 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 adult; they tend to have poor understanding of messages
and relating the messages to action.
The recent research suggests that the condition is a neurone development in the brain rather than to
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 as they do not "control" their child. There is difficulty in
finding appropriate education support and disproportionate numbers 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 have highly developed language skills. In some ways this makes working with them
more difficult as it is hard to access 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
About 1.7 per cent of the UK 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 climbs 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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