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Autism - A Personal Story

The author reflects on her own family’s experience

By Patrice E. Athanasidy

One of the many challenges with autism is that there is a wide range of issues along the autistic spectrum, and outsiders expect every autistic person to be the same. Although many people on the spectrum share similarities in terms of the way they react to social situations or the way they interpret language, not everyone on the spectrum matches those broad categories.

People with autistic spectrum disorders (Asperger’s, PDD-NOS, classic autism, etc.) vary a great deal, so part of being aware of autism means understanding that not everyone you meet with autism will fit the same description.

Ahtanasidy Family

Author Patrice Athanasidy shares a relaxing moment with her husband, William, and their three children Peter, Charlotte and Kit.

My 10-year-old son, Peter, has been diagnosed since he was 3 with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). This means that although he has many signs of being on the autistic spectrum he does not fit completely into any of the particular categories. His “symptoms” are a bit more scattered and have created educational challenges on many levels. He was delayed in terms of speech, muscle tone, coordination and more. When you put all these challenges together for a child trying to learn how to navigate the world, there is a great deal of frustration and stress.

That stress becomes stress for the entire family as everyone tries to avoid triggering a meltdown. When Peter was little he did not have the language to tell me what was too much stimulation or actually painful. It sometimes meant avoiding everything just to be safe, when it was a public event. In this way, Peter would not disturb others if he became stressed and we would not cause too much stress to him.

Now Peter can say, “These lights are stressing me out” or “I hear every single instrument,” when pointing to the stage of a 100-piece middle school orchestra. This means he can try more things as long as we are ready to give his senses a break when he needs it. For years, people have talked about how those on the spectrum shut out the world. I think they do it to protect themselves from the sensory overload. Therapists have discovered that those on the spectrum can be de-sensitized to handle more and more and then remain engaged with the world.

My daughters, Charlotte, almost 13, and Kit, 8, have become very aware of how to help Peter work through things that make him nervous. They are often the ones who can encourage him to try something new and help him feel safe in new situations. Sometimes Peter specifically requests that one of them be with him when he knows an activity will affect him.

Charlotte, for example, stays with Peter when my husband Bill trims Peter’s hair (haircuts at a salon are a bit too much—loud hair dryers, all sorts of scents, so many mirrors). At home, Peter only has to deal with the hum and the fear that the blade will take away his curls. Charlotte stays with Peter and keeps telling him how handsome he is.

Many on the spectrum are sensitive to touch. They either feel too much – a breeze feels like a strong wind, a slight touch is painful; or they feel too little – some children are even unaware of pain at the level of appendicitis. Peter actually has a bit of both, which means at times he feels too much and at times he is unaware of his senses. This, of course, is the most challenging to retrain since it is difficult to determine when he is feeling what.

When Peter was little he did not like to be hugged. We later learned that a stronger hug (one that would almost seem too tight to most of us) was the only way Peter could handle a hug. The deep pressure is actually soothing.

Eye contact was another challenge. Nowadays Peter touches my chin to get me to look at him when I am trying to do two things at once. He is seeking eye contact – a moment to celebrate.

Lately we have more celebration moments and fewer challenges and meltdowns. Part of it is because Peter is learning how to handle the sensory challenges of the world. Part of it is because we know what combinations to avoid so we do not overtax Peter’s senses. We also have more ways to help him soothe himself when stress does come his way.

All my children are a challenge as I help them navigate the world around them. Families affected by autism just want you to know the types of challenges we are juggling so that you can help our children explore the world without being judged. Those on the spectrum often need to take baby steps in social situations and be given some leeway when they take a misstep. The only way they will stay engaged is if we keep helping them learn and explore a little at a time.

Patrice Athanasidy is a veteran journalist living with her husband and three children in Westchester County, New York.