“Tell me about your grandchildren,” is one of the questions that grandparents most often get. And we autism grandparents often hear this question about our grandchildren: “What type of autism?”
When we gain a level of comfort in answering this question, it not only helps us understand our grandchild better, but it can also contribute to the entire family’s (including the parents) understanding.
Formerly used terms such as “high-functioning,” “disintegrative disorder,” and “pervasive development disorder” are no longer recommended – the reason being that autism is so unique with each individual that it’s simply not possible to come up with a descriptive list of three or five or even five hundred specific categories.
Here’s an accurate statement: “Autism Spectrum Disorder is an umbrella term for complex neurodevelopmental disorders that affect communication and behavior.” Each person with autism is affected differently. Even the often-used adjectives “mild” and “severe” are too loaded with assumptions to be effective.
It may be best for each of us autism grandparents to develop our own few sentences to describe our grandchildren.
For example, “Mary is on the autism spectrum. She’s in regular school and is a happy child, and on first glance you may not notice anything different about her, but she’s behind the other children both intellectually and developmentally. She loves making friends and playing with them, and she’s working hard on learning to interact with them appropriately.”
Or, “Frank is on the autism spectrum. He’s in his own world and doesn’t talk much and has real difficulty interacting with other persons. And we continue to work on the major challenge he has when it’s time to shift his attention to something else. He needs a lot of support.”
When you research autism you find continual references to the American Pediatric Association’s 2013 Diagnostic Statistical Manual of Mental Disorders (DSM-5 – meaning this is the fifth and most recent such manual they’ve issued). The DSM-5 is the most recognized and accepted reference, and it has lumped everyone on the autism spectrum into three categories according to how much support is required.
LEVEL 1 – “Requires Support”
These persons may have noticeable differences with verbal and non-verbal communication skills, difficulty changing focus or action, etc.
LEVEL 2 – “Requires Substantial Support”
These persons may exhibit things such as inflexible behaviors, interactions that are limited to narrow special interests, etc.
LEVEL 3 – “Requires Very Substantial Support”
These persons may be non-verbal, may have exhibit great distress when changing focus or action, etc.
But even if we use these levels to describe our grandchildren, it’s almost certain that a more personal description will be more helpful. So the bottom line is that there is no good answer to “type” of autism. We autism grandparents can be helpful by being family leaders in crafting an appropriate brief description of the nature or our grandchild’s autism.
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