So, Simon had officially been diagnosed with Autism. Now what?
Let’s take a moment and talk about what autism is.
Stand back, people. I’m going to do science.
I’ll start with some statistics.
In a new report released in March 2014, the CDC estimates that 1 in 68 children has been identified with an ASD. Autism is almost 5 times more common for boys than for girls. The estimated occurrence for boys is 1 in 42 as compared to 1 in 189 girls. (There is more data in that report that I’ll be touching on later)
Let that sink in for a minute. For every 42 boys born in the US, one of them, on average, will be on the spectrum.
So, exactly, what is autism?
Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges.
Well, that certainly clears things up.
Autism is a severe developmental disorder that begins within the first three years after conception. Most autistic children look like other kids, but do puzzling and disturbing things which are markedly different behaviors from those of typical children. In less severe cases on the spectrum (Pervasive Developmental Disorder (PDD) or Asperger’s Syndrome), children usually have speech and might even be intellectually gifted, but they have one or more “autistic” social and behavioral problems.
Okay, that’s a bit better.
The DSM-V Criteria for ASDs…. Okay. Wow. That’s long.
Diagnostic Criteria for Autism Spectrum Disorder
Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and non-verbal communication.
- Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive):
- Stereotyped, or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capabilities, or may be masked by learned strategies in later life).
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Basically, autism, or ASD, is a lifelong, non-curable neurological developmental disorder, characterized by significant deficits in cognitive, social/emotional, communicative, and/or fine motor skills. The spectrum ranges from High Functioning (or Asperger’s Syndrome) to Low Functioning.
In high functioning autism, people are socially aware and they have good language skills. They may even appear to be relatively “normal” when they meet other people. In low functioning autism, people appear to be mentally handicapped and often are socially impaired. Often, one of the best ways to assess the level of autistic symptoms is to notice how well the person is able to function in daily living.
No two people with an ASD are alike, although certain behaviors and markers seem to be fairly pervasive. Repetitive behaviors (like spinning, turning lights on and off), a strict reliance on routine, lining object up, flapping hands or other “stimming” behaviors (more on this later), marked lack of eye-to-eye contact, inability to distinguish or understand social cues, etc, all seem to be pretty common.
What does the layperson think of autism? I asked some mom friends of mine “what is autism?”. Obviously, not a good sampling of the general population, but give me a break here, I’m working from my couch.
My dear friend G, who has Asperger’s, whose husband has Asperger’s and who has a son with ASD says:
It’s complicated, but to be quick I would basically say it’s a neurological difference that can make common modes of communication extremely difficult or not possible. Communication is possible, but it might have to be non typical modes (like using PECS or signs or writing boards or typing for older kids/adults)….I would change it to “neurological processing difference”, actually, now that I think about it. It’s not just social stuff, but processing. And the processing is the core difference, actually.
My friend, A:
It’s a condition where people have trouble with emotions. It’s hard for them to express themselves the way others do, hard for them to understand their emotions. There are different levels and different challenges children and adults face.
My friend, L, who works with autistic children:
Well, I’m probably not the best one to give a non textbook answer since I’m pretty familiar with it, but when I do have to explain it in laymen’s terms I say autism is a developmental disability that has a major effect on communication and socialization. I also like to use the word “quirky” to describe my kiddos.
Another friend, A:
I would define autism as a genetic disorder whereby you process information/experiences differently and may communicate in non-traditional/non-conforming ways.
Another friend, A, whose step-son is on the spectrum (I apparently know a lot of ‘A’ people):
Gosh, that’s hard. There’s so many variations. I’d say it’s when the brain doesn’t function the same as a neuro-typical brain. It requires more structure and routine. It can be extra brilliant or extra cluttered. It looks at the world differently. Autistic people have trouble understanding social norms, social cues. They can have trouble controlling impulses or understanding why it’s necessary to. It can be like they live in their own separate world, not showing much affection or connection. But, again, huge amounts of variation.
And, finally, because I don’t want to go overboard here, is L:
Autism is a disorder that consists of a spectrum of sensory issues. It can surface in speech and communication delays and challenges, as well as interpersonal difficulties, such as displaying empathy and reading social cues appropriately. Those on the spectrum may also may have immense frustration due to their hypersensitivities to environmental stimuli.
Alright, so most people, at least in my circle of friends, know what they’re talking about.
And now, because I’m tired and sad and have other writing to do, I shall leave this here for tonight. Next time, I’ll try to cover what causes autism and, more importantly, what doesn’t.