Facts About Autism Spectrum Disorders

Inappropriate and Aggressive behaviour in a child with Asperger's Syndrome occurs for a reason, just as it would with any other child. 

Any child that is forced into doing something, especially if they do not understand what is happening or are afraid, will react in one way or another. The situation can also be aggravated if a child cannot explain his wants, needs or fears properly.

Undesirable social behaviour need to be replaced with acceptable behaviour.  Make sure that you provide the child with an alternative method to communicate what he wants or do not want.  Insisting that the child stops his behaviour and participate in what is going on around him will not benefit the child or you.  Rather remove thechild from the situation first. 

A schedule or routine is very important for children living with Autism. Maintaining their  routine will go a long way towards reducing their need for inappropriate or aggressive behavior in the first place. Creating picture charts will help them to understand what is expected of them.  Charts will help them to know what must happen next.  Take photos of the child during the day.  Use this photo’s to create a chart which describes the child’s day.

A few examples:

A photo of him while he is sleeping to illustrate it is time to go to bed.

A photo of him while he is eating his breakfast to show it is time for breakfast.

A photo of him while he is having a snack.......

A photo of him while he is having lunch............

A photo of him while you are shopping in the shopping center.......

Use these photos to create a photo description of what is going to happen during his day or in the future.Keep in mind that children with autism pay a lot of attention to detail, which in turn causes an overload of information.It is difficult for them to distinguish between what is important now, and what is not.If he is following a routine, knowing what happens from one moment to the next, it is easier to understand what is expected of him.

Do not push your son to hard to perform. Too much noise and distractions around him can be very disturbing.Keep his environment calm and simple.Provide lots of encouragement with honest appreciation and praise when he succeeds.

Use a calendar to remind and prepare him of activities that will happen in future. Prepare him to accept that these activities are not negotiable.

Do not try to change everything at once.  Introduce changes gradually and allow him to make decisions.  Provide two choices and no more. 

Help him to organize his room or workspace by putting up hooks, shelves, etc and label each area. Use picture charts to remind him about his routine and responsibilities.  A good example is a picture chart that shows what needs to be packed when he goes to school. If you use this method, he will never forget assignments, pencils or projects.

Children and adults living with Autism need to function in society with or without their parents.  If you start teaching your child now on what is acceptable to society and what is not, this knowledge will be invaluable to him later.

Parents know their child best.  They live with the child 24/7.  Parents grow with the child. They know how to provide exceptional care, especially in the case of a child with a condition such as Autism or Asperger Syndrome. 

Parents of so called “normal” children fear that when they die no one will care for their children like they did.  Just imagine the fear and stress that parents with children living with Autism experiences every day.  

Sometimes there are no other family members that can, or are willing to care for the child living with Autism.  This means that the future of the child on the Autism Spectrum is always in the minds of their parents. 

For single parents the stress is even worse.  While taking care of a full time job and the special needs of a child, (sometimes an adult child on the Autistic Spectrum), many parents forget to take care of themselves and the other siblings in the family. 

Parents feel guilty, thinking that the child’s condition might be their fault. They worry that they could have somehow prevented the condition.  These feelings of guilt and frustration cause them to throw themselves into the job of finding a cure with such gusto that everything revolves around Autism. The need to help the child overrides everything in the parent’s life which makes it vitally important for parents and caregivers to manage stress levels.   

While searching for this cure, a lot of valuable time is lost.................

Current research shows that the impact of the symptoms of Autism and Asperger Syndrome is dramatically reduced if intervention takes place while the child’s brain is still flexible.Symptoms can improve with early intervention, treatment and with age.  Some children grow up to lead normal or near-normal lives depending on the severity of the symptoms. 

Adding to parental stress are unscrupulous people intent on making money, who sell products that they maintain can “cure” Autism.Autism isn’t the problem. The lack of knowledge is.Autism is hidden in the homes where parents struggle alone and become separated from the rest of society.  Autism is the syndrome that places the highest amount of stress, emotionally, spiritually and financially on parents and caregivers.There are more divorces in families where a child has autism than in the household of any other disabled family.

Support for families with children on the Autistic spectrum is not easily come by as the condition is not well known in South Africa even though it is said that every 20 minutes a child is born with Autism.  Everyone knows about AIDS, few know about Autism.  

Some people have heard about Autism but they do not really know what it means or how the condition is manifested.This makes it even harder for the parents to constantly explain that their child is not naughty and cannot help his reactions. 

Society and even family members pressurize the parents with “advice” since the parents of the child does not seem to know how to discipline or educate the child.This puts further stress on the parents because they start doubting themselves and their abilities to cope.  Parents start feeling that they have failed the child in some way.

There is presently no cure for Autism, this is a fact, however it is treatable.  No-one has conclusively proved or produced concrete evidence about this condition either.All the learned scientists are still speculating about the cause and/or future cure.There are interventions that help alleviate symptoms, but it does not cure Autism or Asperger Syndrome. 

Other siblings in the family may also experience stress because the parents spend so much time and energy on the child who lives with Autism.This can cause siblings to become jealous.They may experience frustration because they feel robbed.They may find it difficult to relate or have a conversation with their brother or sister.

Siblings can become targets for aggressive behavior. They may be concerned that they will have to care for the child living with Autism after the death of the parents.Siblings can also be stressed because they empathise with the stress and grief that they see their parents going through.They might even try to make up for the deficits in the child living with Autism.

It is therefore important for parents and siblings to recharge on a regular basis.No one can take care of anyone if they do not take care of themselves first.  Parents and siblings have to find time and space for themselves so that can let go of pent-up anger and frustration.Get out and relax.Invest in getting organised and try and live as normal a life as possible.If  parents and siblings find no joy in life, how can the child feel happy and safe? 

Another source of stress for parents of children with Autism is that children and adults on the Autism Spectrum may find it difficult to express their basic wants and needs.  Parents constantly have to guess what is wrong, leaving the parent or caregiver feeling inapt and frustrated.

Parents are “forced” to provide constant structure for the child in the home environment where there might be other siblings who must also be taken into consideration. Treatment for Autism is expensive and can seriously test the family budget.  The cost of treatment can necessitate that both parents work.  On top of this, the child with Autism frequently struggles to fall asleep which leaves parents exhausted and physically drained.

Most families find it hard to attend social gatherings due to the child  sensory problems for example.  Many children only eat certain foods or have certain mannerisms which are not socially acceptable. 

Not being able to do things as a family can impact the marital relationship. It is difficult for husband and wife to spend quality time alone with each other due to the lack of trained staff or family that can watch the child.

Another source of stress for parents and caregivers are the reaction of the community when the child livingwith Autism “misbehaves” on an outing.People, not understanding Autism, make unkind comments, stare or laugh when the child acts inappropriately.Many parents stop taking the child out and become isolated from their friends, relatives and the community.

One of my children, who love to help me do shopping, one day insisted on removing groceries from the shelf and repacking the items on the shelf where it normally used to be displayed.

A week later, while we were in the same shop, he heard a man swearing when something hecarried fell.My son walked up to him, pointed his finger at him and told him: “that is not a nice word, don’t say it again”

He has also, on occasion removed food from a trolley, telling the lady that:“mamma says this food is not good, you must eat vegetables”

Changes in the attitude of parents can make a big difference, and there are many ways to work on your own feelings.

We must love our child unconditionally and remember that our child can learn and make progress if we allow him or her space to do so.We should remember that our child did not choose to be on the Autistic Spectrum and that without our support and vote of confidence; their chances of becoming self-reliant and successful are slim. 

We should remember four things: 

We are our children’s advocates.

Social rules do not make sense to our children so we should show more compassion and ignore those who don’t, and

We did not always meet our parent’s standards and expectations but they loved us anyway!

We have to understand that our emotions, frustrations and grief are valid and normal. Children on the Autistic Spectrum are alive and real and deserve parents and communities who will value them for who and what they are.

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