A fellow adoptive mom asked me this question this week. Her son has been diagnosed with ADHD, and has seen some improvements through medications and the removal of food coloring and casein from his diet. But she’s seeing signs that he’s struggling academically, and there are still many more “little” things going on.
Initially the professionals they were consulting dismissed the idea of the autism spectrum because her son has language, and very assertively uses it. She knows LuLu, and knows that we’ve had the diagnosis of PDD-NOS for several years. “He reminds me of LuLu,” she commented (and I think she thought she hurt my feelings; she did not; I see the similarities, too.)
Both of our children are sensory seeking and social seeking. Drawing a parallel between them and the Taz, the Tasmanian Devil, would be a great descriptor, especially in gatherings of people where there’s lots of conversation and sensory stimulation.
Frankly, I think this is the way that both of them deal with overstimulation. Both are highly prone to interrupting, lack impulse control, talk loudly, and have abnormal speech patterns. Both can get “stuck” on a thought, phrase or idea. Both can get overwhelmed by sensory input.
And both want desperately to connect with the world. That’s where diagnosticians get hung up in calling what they have autism. The expectation is that they don’t “want” to communicate and withdraw from the world. The expectation is non-verbal and retreating into self. But I’m wondering if this isn’t a misperception on the part of “neurotypicals” of more people with autism than we realize.
I think about Amanda Baggs, who is largely non-verbal and who clearly says that she wants to be accepted for who she is, behaviors and all. Yet, she’s working hard to communicate with the world. I think about adults I know who have autism, and although social situations are very uncomfortable (even painful) for them in many ways, I know them because they are out in the world trying to connect to others. They want the social interaction, and they’re willing to pay the higher price and work harder than most of neurotypicals to get it.
And I see this in my daughter. She wants to talk to everyone she meets. Her engagement skills are much better than they used to be, but are still abnormal (in a pushy way because she isn’t able to read non-verbal cues). Her ability to sustain a conversation (unless you’re talking about her limited set of interests) is virtually non-existent. In other words, once she gets your attention, she isn’t sure what to do with it. She wants to connect, but can’t figure out what to do with the connection.
And she soaks in facts and data like a sponge. So, in your conversation with her, if you give her some new piece of data, it is forever in her brain and forever associated with you. When she sees you again, there’s about a 98% chance she’ll mention that fact to you. There’s about a 75% chance that you won’t remember you even said it. But she will. Will she be able to tell that she’s annoyed you by interrupting, that you are in a hurry and have to go, or that you are bored stiff with the conversation. Absolutely not.
And, even though lots of literature would lead you to believe that people with autism are unable to pick up on humor, this is not true. I’ve had the privilege to spend time with a young woman with autism recently, and she has a wicked sense of humor. She also has definite social and communication impairments. And an incredible head for facts, especially those related to disabilities and disability law. What she knows just blows me away.
I think we have to stop thinking of people on the autism spectrum as not able to or wanting to communicate. Their communication and social skills are atypical, impaired. But most want to connect with the world very much.
