Words Matter
Autism.
According to one dictionary, this is autism…
A neurodevelopmental condition of variable severity with lifelong effects that can be recognized from early childhood, chiefly characterized by difficulties with social interaction and communication and by restricted or repetitive patterns of thought or behavior.
Or, from another source...
Autism Spectrum Disorder (ASD) is a developmental disability caused by differences in the brain.
Words matter. And the words we have used throughout the years to diagnose and describe autism have been changing almost as quickly as the prevalence rate.
In order to meet educational criteria for autism in the State of WI, the evaluating team must answer Yes or No to the following questions:
The student displays difficulties or differences or both in interacting with people and events. The student may be unable to establish and maintain reciprocal relationships with people. The student may seek consistency in environmental events to the point of exhibiting rigidity in routines.
And
The student displays problems which extend beyond speech and language to other aspects of social communication, both receptively, and expressively. The student’s verbal language may be absent or, if present, lacks the usual communicative form, which may involve deviance, delay, or both. The student may have a speech or language disorder or both in addition to communication difficulties associated with autism.
Both of these categories must be marked YES before moving on to the next set of questions:
The student exhibits delays, arrests, or regressions in motor, sensory, social or learning skills. The student may exhibit precocious or advanced skill development, while other skills may develop at normal or extremely depressed rates. The student may not follow developmental patterns in the acquisition of skills.
The student exhibits abnormalities in the thinking process and in generalizing. The student exhibits strengths in concrete thinking while difficulties are demonstrated in abstract thinking, awareness and judgment. Perseverant thinking and impaired ability to process symbolic information may be present.
The student exhibits unusual, inconsistent, repetitive, or unconventional responses to sounds, sights, smells, tastes, touch or movement. The student may have a visual or hearing impairment or both in addition to sensory processing difficulties associated with autism.
And finally
The student displays marked distress over changes, insistence on following routines, and a persistent preoccupation with or attachment to objects. The student’s capacity to use objects in an age-appropriate or functional manner may be absent, arrested or delayed. The student may have difficulty displaying a range of interests or imaginative activities or both. The student may exhibit stereotyped body movements.
At least one of these needs to be marked YES.
Mind-boggling isn't it?
What exactly defines what a “difference” or “difficulty” is when interacting with people and or events? I have had my share of days when things didn’t go so well. Is that a difference? A difficulty?
And yet those are the words we need to use to identify a child (or young adult) with the diagnosis of autism. These are hard conversations. Hard things to look at. For many, it is more of a gut check - in your heart of hearts you know something IS different.
What do we know?
People and Events ARE difficult, especially in certain situations.
When Harry was diagnosed with Pervasive Developmental Delay, Not Otherwise Specified (PDD-NOS), back in 2001, it was common to hear the phrase “Aspergers” or “High Functioning Autism”. And back in 2001 the prevalence rate for autism was 1 in 150 (1 in 99 for boys). For reference, in 1975 the prevalence rate was estimated at 1 in 5000.
We have learned a lot since then and though the DSM-5 has been updated, most of the basics are the same.
To meet diagnostic criteria for ASD (according to DSM-5), a child must have persistent deficits in each of three areas of social communication and interaction plus at least two of four types of restricted, repetitive behaviors This is similar to the Autism Checklist for the State of WI.
But now, instead of using terms like Aspergers or High functioning, we look at levels of severity…
Severity is based on social communication impairments and restricted, repetitive patterns of behavior. For either criterion, severity is described in 3 levels: Level 3 – requires very substantial support, Level 2 – Requires substantial support, and Level 1 – requires support.
And the most recent prevalence rate? 1 in 44.
And we still don’t have a clear answer on what causes autism.
Researchers have not found one single cause of autism however the evidence is leading us to look at commonalities of those identified, including those considered at higher risk. Here is a brief list:
having a twin or older sibling with autism
older parental age at the time of conception
brain growth disruptions in early development
preterm birth
In addition, evidence is showing that autism may be “triggered” by a combination of genetic and environmental factors. Regarding genetics - in the fact that autism is highly heritable and that certain specific gene variants appear to contribute to autism risk. Environmental -in that some evidence indicates that bacterial and viral infections while pregnant, use of certain medications, environmental toxicants, or similar may play a role.
So, where are we?
We know what autism is, mostly.
We don’t really know what “causes” it.
We know that getting the “label” of autism increases access to additional support.
Here is what I know.
Harry Fairbanks with his parents – and IOB co-founders, Mark and Margaret – at his UW-Milwaukee DVC Senior Showcase.
I know Harry. His diagnosis introduced me to the world that is autism. When Harry was identified, I was petrified. It was a world I did not know. Since his identification and all the life experiences that came with it - our journey in this world - have made me a better person. I remember being confused when clothes that had a label with a scratchy feel would bring on a meltdown. I remember thinking all eyes were on us as he tantrumed on the floor and I tossed him over my shoulder and walked out of wherever we were. I remember him being bullied at school because he was awkward and didn’t quite know how to tie his shoes and the school did nothing - in fact told us he needed to get used to it because he was a “quirky kid”. (Don’t get me started!) I remember thinking I would never be able to take him to a restaurant because he would only eat certain foods and would climb under the table to play with his trains. I remember envying people who had “normal kids” and how their lives seemed so dang easy....
But I also know that because of him, I have learned patience. Because of him, I have a deeper sense of empathy and compassion. I see in others the struggles I once had and can offer a kind word of support and understanding, even offer help if appropriate. And in those moments where I don’t think I can hear one more story about a train, I know that it was his love of trains that helped him learn how to read. And in conversations that are “really important” and Harry doesn't read the social cues and interrupts (yet again) to tell us the latest and greatest updates in the world of voice-over actors, I count my blessings. We were told he would never be able to hold a conversation or understand the difference between the beginning or end of a book or even think about going to college. And yet here he is, still on his life journey but step by step proving those experts wrong about what they said he was or wasn’t capable of. So maybe those are the differences and the difficulties that helped identify him. But I am so proud of who he is and who he helped me to become, I wouldn’t have it any other way.
