Wednesday, February 8, 2012

Let's talk about Autism

Lately, I've noticed many people - many of them parents who want to speak up for their children and help to increase public awareness and tolerance - tweeting about autism on Twitter. I decided to write a post about this wide-spread phenomenon. Since a member of my family has been diagnosed with high-functioning autism a few years ago, I have some personal experience in the matter and just wanted to tell you my thoughts about it, although I'll leave the medical facts to the professionals.

The number of new autism diagnoses has been dramatically increasing in recent years, but not in countries of the so-called Third World. It is speculated that this epidemic increase could be linked to vaccines, which makes sense to me but hasn't been proved so far. However, in the USA about 15% of all children between 3 and 17 years are diagnosed with a developmental disorder, such as ASD and ADHD. About one in every 110 children and even one in 70 boys is said to be affected by ASD.

So there's no doubt that we should start to deal with it. It could happen to anyone, so first of all, all parents should be well informed and able to see the signs. The earlier an autistic child begins a special therapy, the better are his chances to improve. These early signs include:

  • not smiling by six months of age
  • not babbling, pointing or using other gestures by 12 months
  • not using single words by age 16 months
  • not using two word phrases by 24 months
  • having a regression in development, with any loss of language or social skills

(For further information, read here.)

At the beginning of the last century, a physician would encounter one or two cases in his whole life; nowadays pediatricians deal with autistic children on an almost daily basis. The correct name, by the way, isn't autism but ADS (Autism Spectrum Disorder). "Spectrum" means that there is a wide range of symptoms. The children can develop very differently, and not all of them will look and act like characters from movies like "Rain Man", or "Mercury Rising ". Often script writers choose Aspergers syndrome as an example of autism, but it's just one of the high-functioning forms of ASD. Actually, many autistic kids wouldn't even appear as "strange" to you if you met them on the street.

Some of these children don't start to talk before the age of two, and others never speak a word. Some of them might be geniuses in their professions later as adults, but won't be able to understand simple non-verbal communication or subtle signals, like a warning look or a comforting hand on the shoulder. Despite being able to solve the most complex mathematical equations, they might be helpless about what to do next when their usual train doesn't show up on time.

Many of these special kids will avoid eye contact, but others will smile at you and look into your eyes like any other child. They will struggle to have friends to play with, while not knowing how to play with other kids, or what to say to them to develop a connection. Some of them will show strange moves of their heads or hands, jumping up and down, fluttering their arms like excited little birds when they are happy.

Some of them will throw immense tantrums in public, especially while waiting in lines, which will cause their desperate parents many judging comments or critical glances by unknowing people. Some of them will cry when their "normal" siblings are invited to childrens' birthday parties and they are not because they are always noisy and unable to sit still at a table.

A common opinion about persons with ASD is that they don't feel, or that they are indifferent to other people. This couldn't be further from the truth. Inside, they yearn to have friends, or to be part of a group of individuals. They don't enjoy being alone - it's just what they are best at and where they don't have to deal with frustration by being rejected all the time.

They are not mentally retarded. Their brain is simply functioning differently, so they are often unable to understand emotional signals and don't know how to react to them as they should. For parents, therapists and teachers, it's an incredibly exhausting task to show their children how to find their way in life. Many of them have to be taught everything from the start, they don't even learn to dress or wash their hands by themselves because they lack the ability to imitate adults as other children do. What's worse, kindergartens and schools are often not enabled to deal with these children. Specially educated teachers and small play groups/classes are required to help them develop.

I know that money is scarce these days but if you'd like to donate, organisations that help families with autistic children like Autism Speaks would be a good place to go. The site also offers great information about ASD and great advice to parents.

But even without money, you can help. The better you are informed, the better you can see the signs. And the next time you notice a child throwing a terrible, noisy tantrum in the middle of the supermarket, instead of thinking "what a brat", you might talk to the parents to see if they need any help. If they are willing to talk, you could even ask them if the kid might be suffering from a developmental disorder like ADS or ADHD. I know this sounds somewhat impolite, but I bet they'll be happy to share their story with you. And if they do, they will be very thankful that finally someone doesn't judge - but asks.

Yours truly,
Deborah Court