My little boy was always different. He smiled easily, but ignored people most of the time. He talked late (but so did his brothers). He preferred communicating in gestures. He would not look me in the eyes unless I made him. And he engaged in some odd behaviors, like lining his cars in spirals in the living room.
When he was four, a daycare kicked him out. “He’s biting other children. We can’t control him.” I was mortified. I found small private daycare near his kindergarten, but it took a week, and I lost my job.
When he was five, we found a way to control his public rages; my future husband took away his name. “You can’t have a cool name like Hunter anymore if you act like that. You’ll have to be Zelbert now, until you control yourself.” This was the first thing that ever worked. At last, we had a way to get him to try, a key to unlock this mystery.
When he was six, a teacher told me what was wrong with him. “He’s AD/HD. You’ll need to put him on Ritalin. Go talk to a doctor.” I spoke with a nurse-practitioner who specialized in AD/HD instead; she laughed when I described him and told me that it was not AD/HD.
At last, two moves, three therapists, and a marriage later, we found out what his issue was. He was eight. And extensive testing diagnosed him as PDD/NOS: Pervasive Developmental Disorder/Not Otherwise Specified.
I researched that. It was an autistic disorder, something close to Asperger’s, but not quite.
My kid was autistic. I felt like someone had kicked me in the belly – but I also felt a great sense of relief. Here I had an explanation for his weirdness – the compulsive but senseless organization, the rages, the resistance to communication.
Diagnosis: Autism
Most people my age grew up thinking autism only applied to the kids rocking in the corners, those who wore helmets to keep them from bashing their heads on the floor, kids who drooled and communicated in grunts. Nothing could be further from the truth.
Instead, autism is a very wide spectrum, a range of mental differences at least as wide as and much less understood than the schizophrenia spectrum. Kids with autism may be exceptionally bright, but geeky, children who do well in school but very poorly socially. They may also be the kids who never talk, who rock, who grin at walls but don’t look at people.
The key markers of all forms of autism are:
- Impaired social interaction
- Impaired communication skills
- Limited range of activities and interests
This doesn’t seem like a very clear way of diagnosing a child with anything, but let me show you how they showed up in my son.
Autism Symptom: Impaired Social Interaction
Most researchers look for one primary hallmark – the avoidance of eye contact. My son had that in spades (he has since mostly been trained to meet your eyes). But his social behavior issues went well beyond that.
At the age of two, he started biting. He did this when other children frustrated him, when he couldn’t communicate what he wanted, or any time a child crossed him. If an adult intervened, he would try to bite them too. We trained this out of him, with some difficulty, by the time he was about six.
He preferred, and still prefers, to play by himself. This would be fine with me, except that he needs extra practice in social interaction.
He talks to himself most of the time, or sings to his toys, or has entire conversations with himself, playing the part of two or more people. Again, he does much better with this today.
He refuses to participate in class. At all. This is something his teacher and I are both working on.
Autism Symptom: Impaired Communication
The main indicator of this in young children is delayed speech. Interestingly, all three of my sons have had very delayed speech, none of them able to talk fluently until they were well past the age of three.
Hunter did not talk to anyone, though. He started using words when he was quite young, but by 18 months had stopped, reverting to grunts. When I insisted that he use words to ask for things – words I knew he had – he would fly into rages, throwing himself on the floor, bending his back into an arch, hitting and kicking anything close by. This was the part of him that eventually gained the name Zelbert.
When he was older and was using words more, he had some very odd tics. If, for instance, he wanted to say “I want a cookie,” but could not think of the word, he would dip into a pool of words that he associated with “cookie” – wheel, cheese, candy, chocolate, circle. If I got it wrong, he might again become Zelbert. If I questioned him further to figure out what he really wanted, he often got frustrated and just walked away.
Autism Symptom: Limited Range of Activities/Interests
This is the OCD-related part of autism. Hunter fixates on specific things. Up until about three months ago, his main fixation was his Yu-Gi-Oh! cards. He could tell you every power, every ability, every word on the cards, even though he could not read his textbooks. (He has since become a pretty decent reader, though he has trouble with organizing meaning.)
But his obsession went beyond the cards. He applied the card power system to real life. For instance, if he wanted to fight someone, he would say that he had a defense of about 4000, and an attack of about 6000, but he thought the other person only had a defense of about 2500, so he could take them. For about a year, he tried to apply this system to everything in his life – people, dogs, cars, toys, televisions, everything.
Today, he is embarking on two new obsessions: Pokemon and psychic ability. He wants to be a Pokemon trainer, and he claims that he dreams the future and can tell people what will happen to them. (Being an open-minded skeptic, I might believe the latter if he were ever correct!)
With Hunter, the obsessions are pervasive, infecting every corner of his life. This is, I think, because the simpler systems he finds in games are more sensible to him than the very complex system he has to live in.
As a side effect of the above three symptoms, children in the autistic range deal very badly with change of any sort. This is a real problem for us, as we are a military family. With every move, I have to get Hunter excited about the adventure, and help him understand that change doesn’t mean his world falls apart but rather that his life will get better. It’s a struggle.
But when we took 45 days to drive cross-country from Connecticut to LA last year, we were well rewarded; he had a ball, and learned a lot about our country. We hardly saw Zelbert come out at all.
The Difference Between Autism and PDD
PDD is actually a blanket diagnosis, holding autism under its umbrella. All PDD diagnoses are considered to be part of the autism spectrum, but each of the main diagnoses and the NOS (Not Otherwise Specified) diagnosis show the three autism symptoms detailed above.
The four named forms of autism are:
- Autism
- Asperger’s Syndrome (the closest to my son’s version)
- Childhood Disintegrative Disorder
- Rett Syndrome
NOS is generally applied to a child when the therapist does not think there is enough evidence to place him or her under any of the other forms. Only when the symptoms are very clear will an experienced therapist diagnose anything besides NOS for a child under the age of 5. Often, children never receive any diagnosis beyond NOS, which makes it extremely difficult for their parents to get specialized care designed for autistic children – even though the child will likely benefit from that care.
Hunter also has a truly vexing problem found frequently in autistic children – encopresis. Again, we have to work with him constantly, reminding him to go to the bathroom, insisting that he defecate on schedule. I go through a lot of bleach.
Back To My Son, And How We Cope
Right now, I’m trying to turn Hunter’s attention to realistic goals. For instance, he has developed a fascination with cooking. I’m teaching him how cooking works.
This is easier because I am a from-scratch cook, and I understand the chemistry behind it. Instead of just mixing things up from a box, I show him how vinegar reacts with baking soda and what the rules are in chemistry that make this happen – and then show him that baking powder in water fizzes the same way. We talk about fizzing action, and how the bubbles in the reactions become the holes in breads and muffins.
And then we eat the results, of course!
In school, he has a really tough time. He has much larger classes here in Hawaii than he’s used to, and he does not like to participate in group sessions – so he simply refuses. He has a very difficult time doing homework by himself. And because he does not follow class rules well, the other children tend to not like him. This has only become clear in the last couple of weeks, so I’m going to visit his class soon and see if I can figure out why.
At home, I only have a few rules, but they are very strictly enforced, and not just for my kids. Guests in our home must adhere to the rules, reinforcing Hunter’s structure and giving him starting points for all his behaviors. This has paid off enormously; Hunter has mastered etiquette and courtesy, and is a very well-liked child in the neighborhood by adults and children alike.
Overall, at the age of ten, Hunter is doing phenomenally well. When he was seven and undiagnosed, he was nearly impossible to deal with. Today, simply by truly understanding what is going on in his head, his teachers, his stepfather, and I all are able to modify his behavior – and our own – to communicate with him in ways he understands, and to teach him how to communicate with the rest of the world as well.
An Unexpected Bonus
In learning about my son’s autism, and in teaching him how to cope, I was struck over and over again by the similarities of his behavior – to my own as a child. After extensive research and self-testing, and talking to lots of therapists in conference with him, I reached a startling conclusion.
I am autistic too – not profoundly by any means, but undeniably. It explains a lot.
My next article will talk about that, and what my own life and thoughts are like in light of this discovery.
