I’ve been pondering how to talk about this for a bit because there is so much misinformation out there and so many people who blog about the topic and have no concept of information literacy which causes them to perpetuate the cycle of misinformation. I’ll touch on aspects of this misinformation later as today’s task is to just talk about what this looks like for us.
So… Daniel was diagnosed at age 2 1/2 with mild/moderate autism.
What this actually means: I really like this definition from the National Institutes of Neurological Disorders and Stroke:
Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.
The term “spectrum” refers to the wide range of symptoms, skills, and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5, published in 2013) includes Asperger syndrome, childhood disintegrative disorder, and pervasive developmental disorders not otherwise specified (PDD-NOS) as part of ASD rather than as separate disorders. A diagnosis of ASD includes an assessment of intellectual disability and language impairment.
For my kiddo, this means that his brain receives too much sensory input and he has to figure out how to process all of it. He has apraxia which means that the connection in his brain between the words he is thinking and what he wants to say is not fabulous and he can’t make the words come out. (I explained it to my VBS kids as him having a roadblock that the words have to get around.) He used to deal with the overabundance of sensory information by opening/closing doors, flipping light switches, and opening/closing drawers.
How we treat it: He has been in an ABA or autism-specific class since his third birthday. (We were quite lucky that there was one just down the street from us at the local state-run preschool.) He has had in-home ABA therapy as well and when we’re trying to get him to do something, we resort to some of those tactics. We (well, me) also very intentionally force basic interaction in order to teach it to our kids by repetition.
How you can help out friends with kids in the same situation: Please be patient with us and with our kids. We know our child is doing [insert stimming behavior] and if we could stop it, we would. Treat our child normally and talk to them as you would anyone else. (In other words, no baby talk.) Please also refrain from telling us stories about your cousin’s roommate’s aunt’s second husband’s neighbor’s son who is autistic but is at MIT doing complex research at the age of 12 or telling us that you’ve heard that a gluten-free diet will cure it. THERE. IS. NO. CURE. IT. IS. A. WAY. OF. INTERACTING. WITH. THE. WORLD. The GAPS Diet also is not perfect and does not work for every kid, especially with a kid like mine who has a tough time eating anyway.
And for the love of all things holy, don’t even think about mentioning the fallacious link between autism and vaccines. Most moms of autistic kids will look at you with incredible pity that you are so misguided and will likely never trust any advice you give them ever again. Seriously, autism is not a death sentence and treating it like the most horrible thing in the world is insulting to us.
These are the three places I go when I need information on autism:
Lucille Packard Children’s Hospital Autism Services (I’m an alum of the NICU at the hospital.)