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What is Autism ?

“Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees…” 6)

Autism affects each individual differently and at a varying degree…

However - some of the more common symptoms of Autisms are:

◊ not wanting to cuddle or be cuddled;

◊ aloof manner;

◊ preference to being alone;

◊ difficulty interacting with others;

◊ non responsive to verbal cues;

◊ difficulty in expressing needs;

◊ repeating words or phrases in place of normal language;

◊ laughing and/or crying for no apparent reason (mood-swings / tantrums)

◊ resistance to change;

◊ obsessive attachment to objects;

◊ spinning objects;

◊ obsessive compulsive tendencies;

◊ no sense / fear of danger;

◊ apparent over-sensitivity or under-sensitivity to pain;

◊ uneven motor skills (gross/fine);

◊ unresponsive to normal teaching methods. 7)

Obviously every child / person with autism is different.

This is where your personal involvement comes in – you are the parent (caregiver) – you know your child best!

Here are some of our observations:

☺ Tommy was very much an aloof child. He would wander alongside the other children without participating. He would mostly give us the feeling that he wasn’t paying attention – but he was: usually non-verbal – he would sometimes say a complete sentence indicating he understood. This led us to believe that he was able and did comprehend a lot and so we talked normally with him and still do…

☺ Routines have always worked very well for us. You can divide the day into segments that allow you and your child to stay on task and follow a schedule one by one.

However – deviating from a routing can be quite difficult and confusing. What has worked well for us, is to explain to Tommy what’s going on and why we are doing things differently right now. This goes right along with the strategy to assume that he comprehends. We also never made any promises we couldn’t keep: If we told him we would go to the zoo tomorrow than that’s what we would do – otherwise we’d say: maybe…

☺ Tommy used to scare us by “wandering off” – this can be quite scary – especially when you are in a crowd of people. We worked hard to have him be able to say his name and address and phone number and – just in case – we’d attach an ID-tag to his clothing that would say “My name is Tommy – I’m autistic” and then have mom and dad’s address, hotel or phone number (this was before cell-phones!). We had door-chimes mounted on all exit doors of the house as well. On the few occasions that we did “loose” him, we noticed, that he had a very good sense of where he was and where he was going – and was usually pretty deliberate…

☺ Tommy made up for the lack of communication by demonstrating that he is extremely “visual”. That comes in handy for things like puzzles but it also helped him learn how to navigate on the computer. Windows is actually very visual – the toolbar is obviously pretty self-explanatory – and the browser was an extra challenge to have him type (another form of communication!). We also tried to learn by association – meaning that “A” is for apple and “W” is for Whale and you can actually learn how a word “looks”.

Add to this the special interest (in Tommy’s case: Disney Characters and whales – or – animals in general): We were able to learn continents via animal habitats and the migration of the whales and US States via attractions like Disneyland and Seaworld!

☺ The main idea is: Never underestimate your child – challenge him (her) and find out how far he can go. Allow him to reach his potential. And don’t forget the praise! High Five’s are very important for a job well done.

☺ Idiosyncratic behavior will be accepted in a small child. As your child gets older, he (she) may still remain the little kid. However – he now doesn’t look the part any longer. This can create a problem in public places. People will stare! Also: he may (try to) interact with little kids (maybe he likes a toy he sees the child is playing with). A well intended gesture or maybe the attempt at a hug can easily be misinterpreted as hostile and /or threatening because it’s not age-appropriate behavior and your child is a lot bigger than his counterpart. Be aware of this. Society has come a long way in allowing our children to be accepted – usually it will help to explain to the other child or their parent – most everyone has heard the term “Autism”.

You may also work with your child at “what’s o.k. to do”.

☺ Never forget that your job is not only to be the parent - you are also your child’s advocate and this will be your job for the rest of your life.

IEP’s are a good way to communicate with the teacher and show them that you are involved and care about your child’s accomplishments.

☺ We owe a lot to the parents that came before us and helped overcome the myth of Autism (“refrigerator mothers“ 8)) and lobbied for the right of schooling and helped to create the American’s with Disabilities Act.

☺ Be involved with your local Autism Society Chapter, vote and watch what’s happening legislatively!

And most of all:

☺ Love your child!

Links:

We’ve traveled a long way – our research started long before the Internet became available.

“The browser-bar (rather than the sky) is the limit” – there is so much autism related information out there:

Not only sites but also chat-rooms and message boards are up virtually 24/7.

Here are some of our favorite links:

Autism Society of America:

http://www.autism-society.org/

Autism Society of NC

http://www.autismsociety-nc.org/