Wednesday, March 21, 2012

What is Autism

You know that feeling you get when you’re on a really good amusement park ride? There’s the thrill of the roller coaster twisting you this way and that, then taking you to the top of the giant hill and dropping you off just as you grasp onto what is about to happen. As you reach the bottom of the slope you get thrown back another direction and hit a tunnel which causes everything to go pitch dark, but only for a minute. Then strobe lights are flashing in your eyes, and the light from outside blinds you suddenly as you flip through two loops. Just when you think you can’t take anymore the ride is over. You get off feeling a little disoriented, steady yourself, maybe sit down for a second, and think, “Man that was awesome, I’d like to do it again.”

Now think about this going on all the time, or at least a majority of the time. This is similar to what it’s like for a person with autism. The only difference is that they can’t get off the ride, or sit down until they regain their bearings. Can you imagine a non-stop rollercoaster of life?

Of course I’m only giving an example, and I don’t know firsthand that this is the way they feel. I can only tell you examples of what I have read and/or heard from interviews with autistic people (search “living with Asperger’s” on youtube). I can tell you that when this occurs it turns their world upside-down. This I do know firsthand.

So why is there such an imbalance in their world as opposed to a neurotypical person (this is the term used for the “normal” among us – meaning non-autistic)? The answer lies in the definition of Autism. I found one of the best definitions of Autism on the Medical News Today website. It states that Autism is:

A complex developmental disability. Experts believe that Autism presents itself during the first three years of a person's life. The condition is the result of a neurological disorder that has an effect on normal brain function, affecting development of the person's communication and social interaction skills.

People with autism have issues with non-verbal communication, a wide range of social interactions, and activities that include an element of play and/or banter.

While little is known about the origin or cause of the disorder, we do know that it affects 1 in 110 children. This is up from 1 in 5,000 children in 1980. That number seems to be increasing rapidly. It’s not clear whether the numbers are up because of better detection, or because of more cases. The cause has been debated heavily throughout the past 15 years or so. I’m not going to get into those discussions in this column today, but I will say that the research is nowhere near where it should be on this subject.

The most common questions I get are: “How do I know if my child is autistic? What do I look for?” My immediate answer is that if you’re asking me, you probably have a feeling that your child is affected by it. In fact, 99 percent of the parents who ask receive a diagnosis shortly after. So what are the warning signs?

Let me start with my experience. Konner was a “normal” child as an infant. He developed regularly with all the typical milestones of anyone else. He crawled, walked, and even began talking at a normal age. By that, I mean he said mama, daddy, and small words. However, at the age of about 18 months my wife realized that he was no longer talking like a normal child, and there was a lack of eye contact. He stayed to himself, and had little social interaction with anyone. It was at that point that we decided to ask questions and eventually get a diagnosis.

Let me stop and say that of all, the parents I’ve talked to, family members, grandmas, grandpas, aunts, and uncles; the moms are always the first to know. Before the diagnosis, before they look up the symptoms, and even before anyone else can tell there’s anything different about their children, the moms know. Call it woman’s intuition, but it’s a fact!

So what are the signs of Autism? Before we talk about this let me explain that there are three major areas that this disorder affects. They are social skills, language skills, and behavior skills. According to the Mayo Clinic’s website, some of the warning signs include (I’m going to include some of my own experiences):

Social skills

§  Fails to respond to his or her name – I can’t tell you how many times I had to check to make sure there wasn’t something wrong with Konner’s hearing. I knew there wasn’t because he covered his ears when things bothered him.

§  Has poor eye contact – There is a really good book called “Look Me In The Eye” by John Elder Robison I recommend, and will cover in a later column, that gives some explanation of this. We still have trouble with this, but things are looking up.

§  Appears not to hear you at times

§  Resists cuddling and holding – This is different with each child. Luckily with Konner he doesn’t mind the hugging. In fact, at certain times he welcomes it because of the pressure (something else I’ll cover later).

§  Appears unaware of others' feelings – We’re having real issues with Konner right now because he laughs or mocks others when they are hurt or upset.  Children with Autism process emotions differently than others.

§  Seems to prefer playing alone — retreats into his or her "own world" – Konner can play by himself for hours, especially if there is something that he finds amusing.


§  Starts talking later than age 2, and has other developmental delays by 30 months – Thanks to speech therapy and early intervention Konner was talking with sentences by about 3 ½ years old. He’s still delayed, but it is improving.

§  Loses previously acquired ability to say words or sentences

§  Doesn't make eye contact when making requests

§  Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech

§  Can't start a conversation or keep one going

§  May repeat words or phrases verbatim, but doesn't understand how to use them – Konner can be a human tape recorder at times. You think a neurotypical child can repeat things, try dealing with echolalia (we’ll discuss this at some point).


§  Performs repetitive movements, such as rocking, spinning or hand-flapping – Konner really uses the hand flapping when he’s over stimulated. The overstimulation really brings these movements out in an autistic person.

§  Develops specific routines or rituals – Konner had to have baths a certain way; first this, then this, then this, etc. He gets upset if this changes, or with transitions from one thing to another.

§  Becomes disturbed at the slightest change in routines or rituals

§  Moves constantly

§  May be fascinated by parts of an object, such as the spinning wheels of a toy car – Konner lined up everything in order; shoes, trains, cars, boxes, etc.

§  May be unusually sensitive to light, sound and touch and yet oblivious to pain – Konner’s pain level is unbelievable sometimes. There are times when he is sick that we just know it from the fever, or when he’s run into things and has bruises, but doesn’t complain about it.

Your doctor may recommend further developmental tests if your child:

§  Doesn't babble or coo by 12 months

§  Doesn't gesture — such as point or wave — by 12 months

§  Doesn't say single words by 16 months

§  Doesn't say two-word phrases by 24 months

§  Loses previously acquired language or social skills at any age

There’s a saying among the Autism community which says: Once you’ve met one autistic person, you’ve met one autistic person. This is because no two cases are alike. The thing to remember is that this is a spectrum disorder. This means that there are numerous symptoms spread out over this spectrum, and there are several types of autism. These include severe to high functioning types including: Asperger’s syndrome, childhood disintegrative disorder, Rett syndrome, pervasive developmental disorder, Turrets syndrome, and classical autism.

What to do? If you suspect that your child may have a form of Autism don’t hesitate. Contact your doctor for a consultation. I will say that the doctors (pediatricians) still don’t have a grip on what autism is, or how to diagnose it, but they are getting better. Early intervention is a key to helping an autistic child succeed in life!

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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