What Is Autism?

The technical answer to this question is somewhat longwinded and can be rather complicated to explain to someone who knows little about the condition.

And it was interesting to see recently on one of the message boards that we like to visit, that there was a discussion based around how you might explain your child’s condition to someone.

So… What Is Autism?

This question has always been a really tough one for us.  Whilst we ourselves understand what Autism is, and how it relates to Jack, we find it really difficult to put it into a short succinct explanation that people understand and can connect with.

We usually start with the social stuff, as this is what people see when they meet Jack.  We try to explain that Jack sees the social world through different eyes to many people, and that ‘typical’ social settings often make him anxious and quite irritable or stressed.  But for some people even this simple explanation never seems enough - we still have people look at us like they don’t understand.

Then if we ever need to go on to explain sensory issues, or other symptoms to people, it’s an even bigger challenge.

Some people associate their own ‘typical’ child’s behaviour to Jack’s by saying things like “oh yes, my child throws tantrums too when they’re tired”, or “my child doesn’t like shopping much either”, or “my child can be fussy about what they eat”.  But do they really ‘get it’???

So we continue to try and refine our definition and explanation, and when people do understand, it’s like a breath of fresh air to us.

Just maybe, one day we won’t even have to explain…..

But until then, if anyone can help with a short and succinct ‘lay persons’ version of what autism is, we’d really appreciate some input.

Choosing Gifts for Children with Autism

We found this article today that had a few helpful tips for people looking to buy a gift for an autistic child.  We thought it could be useful as we hit peak ‘gift giving’ time.

Over time, parents of autistic children will adapt to their child’s likes and dislikes in regard to ‘presents’ and ‘gifts’ - for many it’s a matter of trial and error in working out what ‘works’ for their child.  But for families and friends looking to buy gifts during the holiday season, a few tips or hints never go astray!!!

To ensure ‘gift giving’ is a successful event for an autistic child, one of the best things that family members and friends can do is to first talk to the child’s parents, and get a feel for what will work best with the child.

As an important tip for a gift bearer - an autistic child is unlikely to receive a gift in a similar manner to a ‘typical’ child.  From our personal experience we have seen many disappointed faces of well meaning gift bearers who want nothing more than to see excitement as their gift is opened.  Although hurt feelings are difficult to avoid when a child throws a present away unopened, or opens a present but then turns their attention back to something of greater interest to them, or opens a gift but then just stares blankly at it, it is vital to remember that these reactions are normal for autistic children, and are in no way intended to hurt or upset anyone.

PS - And if an older child has more interest in the paper than the gift - that’s normal too!!!

People often ask us the question, “how do you cope?” or “how do you do it?”

Usually they are referring to some issue relating to Jack’s autism spectrum disorder.

It’s funny, but our coping strategies for much of what we face have become such a normal everyday part of life that they no longer seem ‘a big deal’ or ‘autism related’.

Most parents have strategies in place to deal with challenges they face in relation to their child - this could be anything from difficult behaviours, to learning difficulties, to ’childhood fears’.  Parents have methods in place to help their child manage life in the best way they can.

Parents of a child with autism are no different.  Yes, many of the strategies may be more involved and specialised than those used for other children, and they may require more persistent use and focus, but overall they have the same purpose and are put in place for the same reasons - to help the child (and parent) manage life in the best way they can.

We often take for granted what we do on a daily basis.  Occasionally we might overhear a parent describing a tantrum that their child threw in the middle of the supermarket - usually the parent is mortified and completely at a loss as to how to manage such behaviour.  At these times we usually smile and reflect on how life evolves.  It is not our intention to disregard this other parents distress at all, but tantrums have become so ’second nature’ that we don’t stop to think about them much now.

As parents we adapt to what life presents us.  It’s only when we stop and look around us that we realise that everyone has challenges at different levels and that amazingly enough, the strategies that develop to manage and cope with these challenges simply become a way of life.

We came across this poem that seemed to fit our lives so well:

I have written before on the pro’s and con’s of labels, and this post is far from a debate or discussion on that topic.  It is simply a reminder that words and actions are powerful and have an incredible effect on our children.

So find some ways to ‘free your child’ from what may restrict them in life:

• Find opportunities for your child to see themselves in a positive light - help them to see what they are good at and what is great about them.
• Put your child in an environment, and in situations, where they can succeed.
• Talk positively about your child to others - and let them hear you saying great things!  Having a special person believe in them and speaking proudly of them will do wonders for their self-esteem.

Too often (even without us realising), our children with autism have limits placed on them simply through the language we use and the actions we take around them.

Take the time to create an environment for your child’s life that is full of potential and belief - ‘free your child’.

Children with Aspergers Syndrome often struggle with social situations, unable to process information or their environment appropriately or in a manner that is timely.  However, roleplaying with your Aspergers child can be a great way of helping them to learn and practice responses to situations they will inevitably be faced with, and at the same time help them to understand that different actions have different consequences.

When using the process of roleplaying, the idea is to create a scenario related to your child’s life.  A scenario would involve creating a setting - time, place and people involved.  It would also involve an explanation or discussion of what might be happening in the setting, as well as a discussion of different responses or actions.  And of course, there must be appropriate or ‘natural’ consequences for various actions.

With the help of your child (and perhaps other family members or friends) work through the scenario slowly.  Give your child the opportunity to try out and explore different responses to the scenario and help them through dealing with any consequenses that they will face as a result of their choice of response.  Don’t worry if your child makes an inappropriate choice or struggles to make their way through the role play - the idea of roleplaying is all about practicing, and the more a child practices the easier it will become for them to deal with these scenarios in real life.

Introduce roleplaying in to your Aspergers child’s life gradually - like any other change, there may be some resistance at first.  Work at it slowly to start with, supporting and encouraging your child to build their self confidence.  The benefits of roleplaying with your Aspergers child can be enormous.  Your child has the opportunity to explore real life situations, and as such explore the consequences of their actions and responses in a safe and ‘forgiving’ environment.

One thing to note is, children with Aspergers Syndrome often take things very literally, so if your child is unable to imagine pretending to be another person, it may be an idea to try this with puppets, or use photos of people on ice cream sticks. 

We were delighted to hear this ‘breaking news’ in Australia today:

PM unveils help plan for autism families

Wednesday Oct 3 11:20 AEST

The Howard government will on Wednesday announce a funding package to aid the parents of autistic children.

The package will be announced in a series of coordinated launches involving senior ministers across the country, including Prime Minister John Howard, who is on the Gold Coast.

Read more on this story at : http://news.ninemsn.com.au/article.aspx?id=84226

Despite the usual political comments back and forth between parties, claiming one’s policy is better than the other, it’s great news for Australian families.

Steve & Elissa.

As a parent, you have known for a long time that something is very different about your child, but you can’t put your finger on exactly what it is.  So you start seeking answers.  You look to medical professionals, and you do your own research, and you are constantly confronted with labels.  But which label to attach?  And then, should you really attach a label to your child?

There are two quite separate views in society when it comes to labelling conditions and both have their merits.

Firstly is ‘not to label’:

Labelling a child can conjour up negative ideas and emotions, and may create undue stress and anxiety.  Parents want the best for their children, and sometimes unsuspecting parents can find it devastating to have a label placed on their child.  Labelling a child can place them in a box, and may limit their potential.  It denotes them as being different, and if used carelessly, separates them from society.  A label may stigmatise a child - mark them as a social misfit or disgrace, and leave them feeling shameful.

The alternative is ‘to label’:

Labelling a child with a condition can give a signpost - or in other words, a place to start.  Parents who have spent time desperately searching for answers to their child’s challenges and differences in life often find it relieving to be able to give their child’s way of being a label.  The blur of life’s uncertainty starts to clear a little and a path appears ahead.  Labels can help to establish a sense of order.  They help to point out appropriate support groups, counsellors and treatment options.  Labels can also increase awareness in society - hopefully increasing the effectiveness of diagnostic work, and professional studies.  A label used in the right way may very likely lead to a more positive environment for a person, and could greatly improve a persons outlook on life.

So it comes down to one question - ‘to label or not to label’?

Choosing whether or not to use a label with your child really depends on how the label will be used.  Whilst labels can be destructive they aren’t always bad news if used with great care.  Labels used in the right way can ultimately help to improve a child’s quality of life, give them a sense of certainty, and even provide answers to questions they themselves have.  But just remember the power of a label.  If you choose to use one, avoid anything that is detrimental to your child’s well being.  Use a label carefully and selectively and be sure to give it the positive focus your child deserves.

My suggestion - use labels where you need to, but don’t make them your life.

One of the challenges that parents might face in the initial stages of having their child diagnosed with autism is finding a doctor who really understands it.  There are a range of degrees of autism (hence the term Autism Spectrum Disorder) and no one case is likely to be the same.  Unless a doctor has had experience with autism, it will be unlikely that they will be able to help effectively diagnose and treat the condition.

Regardless if you, your family doctor, or your child’s pediatrician suspects autism, it is vital that your child be assessed by someone who specializes in diagnosing and treating autism spectrum disorders.  By seeking out specialist care you will ultimately be putting your child in the best position possible for a healthy future.  It also may mean that your child will require care from more than one medical professional who specializes in autism.

Some of the medical professionals making up the multidisciplinary specialist team for a child with autism would be; a psychologist, a speech or language therapist, an occupational therapist, a physical therapist, and a social worker.  Of course there are other specialists as well, and this list is often complemented by a range of natural therapists.

To find the right professionals to help with the care of your child it is important to ask for recommendations and do your research.  Make sure you check the experience and approach of the professional - the person needs to be right for you!  There are many resources and reputable organisations online that can assist with your search for specialists, as well as local community health groups, government departments and other health centres that can also point you in the right direction.  If your child is at school or preschool, ask the welfare officer or support team for some guidance - these people are often a wealth of knowledge and information!

Once you find the professionals your child needs, it is important that you work closely with them.  Regardless of the experience the professionals have with autism, you are the most experienced when it comes to the specific information regarding your child’s needs and abilities.

Some pointers to remember when working with your child’s doctors and specialists:

* Educate yourself – find out and learn as much as you can about autism.

* Prepare yourself - go to appointments ready with any questions or concerns you have regarding your child.

* Be open with communication – work in partnership with your doctor, and remember to pass on all relevant information.

* You can always get a second opinion!

Some great websites where you can find advice and support:

* Autism Spectrum Australia (www.aspect.org.au)

* Autism Info Australia (www.autisminfo.org.au)

* Autism Society of America (www.autism-society.org)

* Autism Treatment Services of Canada (www.autisim.ca)

* National Autistic Society (www.nas.org.uk)