I want to introduce you to someone whom I know that will capture your attention as she tells a story that many of us can identify with. I found my eyes moist with tears, a catch in my throat and wanting to read more! Without further ado, please welcome Jeannie Davide-Rivera as she shares...
The Child Who Gets “Missed”
By Jeannie Davide-Rivera, author of the book Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism, autism expert category writer for autism.answers.com, and autism and Asperger’s blogger at www.aspiewriter.comAutism is so often characterized as a social communication disorder—something that drives me bonkers because it is so much more multi-faceted than that.
New Guidelines: New Problems
According to the DSM-V’s diagnostic criteria for autism spectrum disorders, a person MUST meet/show “deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.” This is non-negotiable as far as the DSM-V is concerned and I think it is causing some children who appear more social than most children with ASD to get “missed.”
I have one ASD child, a 14 year-old, that I cannot get out of the house. He is not social, does not have any desire to make friends, and is relatively content to keep his social interactions limited to online game playing. I have another child, a 9 year old, who I cannot keep IN the house. He is the social butterfly. He wants to be out all the time playing with his friends, wants to go to parties, and have guests over 24 hours per day, 7 days per week. It is this child that I want to discuss because if one more person tells me that he cannot/or they do not “believe” he has an autism spectrum disorder because he is social, I am going to scream! And the two words I am going to be screaming are ABNORMAL APPROACH!DSM-V, “Abnormal Approach”—This Describes My 9 Year Old
Yes, he wants friends, he wants to be social, but he fails to accomplish it— he fails to maintain age-appropriate peer friendships. This appearance of socialization has precluded him from having his ASD recognized properly, and from receiving help in school because he does not “appear” to have autism. The little man more accurately fit into the old, DSM-IV criteria for Asperger’s Syndrome, than these new criteria for Autism Spectrum Disorders. I believe part of the problem is that “abnormal approach” is not easily definable.
The Neighborhood Stalker
So let’s take a look at my extremely social kid! He is bossy, overbearing, has difficulty taking turns, has little notion of personal space and is rigid in his play and thinking. All of this causes his social interaction to become stressed, and when he gets stressed, he gets angry. If my son goes to a friend’s house to see if they can come outside to play, and their parents tell them they will be home at five o’clock, my son will be on their doorstep at ten minutes till five waiting. If you are not there at five, you are a liar. You are not simply late, or running behind—you lied to him! You told him five o’clock, you said it, he believed it, and you lied. Some of those parents do not allow my son to play with their children any longer.
But—he does have friends. He is friends with a few children here on our block. The little man makes friends easily, but then turns into the neighbor stalker. He sits at the window in my bedroom which looks in to the parking lot for our townhouse community waiting for the neighbor’s car to pull in so he can pounce. He will be out there before the poor family is even out of their car. Explaining that we cannot take these other kids with us everywhere we go—family vacations, trips out of town, weddings, funerals—does not seem to work. He simply doesn’t “get” it.
Let’s talk about this “making of friends.” While sitting at the park watching the boys play, I hear the little man giving someone my cellphone number—a stranger! He is standing in front of some strange man who is at the park with his son, and insisting the man get a pen to write the number down.
The dad is uncomfortable, I am mortified, and the little man oblivious. He cannot understand why he can’t give my number to strangers. Then he finds other children and he insists that he go to their houses to play—now, and gets upset when I don’t let him leave with strangers. This is not a small child we are talking about; this is a boy who is going to be 10 years old! Does this sound like a normal approach to socialization to you?
Social deficits in autism spectrum disorders can present themselves in so many different ways. Some are readily apparent like my teenager, but others children may desperately try to make friends and be unsuccessful—or make friends but then fail to keep them. Just because a child “seems” social to you, doesn’t mean they aren’t struggling. My little man is often frustrated and angry when he comes home from a day “at play.”
Struggling for a Proper Diagnosis
Depression, Anxiety, Adjustment Disorder, ADHD are all labels/explanations that are given to partially explain his difficulties, but none of them fit perfectly. I fear he will become one of those “missed” children, as I myself was one of those “missed” children. Being improperly diagnosed makes it difficult to get the help and accommodations needed for our children to succeed. Without proper recognition, he is just lazy, disorganized, inattentive, needs to try harder, and is not living up to his potential—all the things said about me when I was younger. None of them were true, not for me, and I believe not for him either.
We continue to attempt to have him diagnosed correctly. We as parents know our children better than anyone; we are the experts. We interact with them on a daily basis and see a much broader picture than the practitioners who only catch a glimpse seen through the limited confines of the short period of their evaluation process. I urge you, if you have had similar results and frustrations, to continue on, to keep pursuing a correct diagnosis. No one is going to fight better for your child than you. The appearance of being “social” should not in and of itself rule-out an ASD diagnosis—nor does this social appearance indicate that the child has “grown-out” of his autism.
Jeannie grew up with autism, but no one around her knew it. Her book Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism will take you on a journey into the mind of a child on the autism spectrum; a child who grows into an adolescent, an adult, and becomes a wife, mother, student, and writer with autism. Read the gripping memoir of a quirky, weird, but gifted child who grows up never quite finding her niche only to discover at the age of 38 that all the issues, problems, and weirdness she experienced were because she had Asperger’s Syndrome (AS), a form of high-functioning autism. Interested in reading more of Jeannie's work, visit her blog Aspie Writer and follow her @AspieWriter on Twitter!