There’s a saying that if you’ve met one child with autism, then you’ve met one child with autism. It’s true. They don’t call it a spectrum disorder for nothing. I know children who are mainstreamed and academically at grade level with autism, and teenage children who don’t speak and still wear diapers with autism.
My daughter is 11 years old now and attends a “typical” school, but in a self-contained special education classroom. She participates in inclusion for a few classes – for art, music and library – which she always attends with an aide. Academically she is NOT at grade level. Even though she is technically in 5th grade, her reading level is at around 2nd grade. Her math ability is very poor and she can barely do the most basic addition. She can only add small numbers if she uses a number line or her fingers. She hasn’t been able to memorize even 2+2, but amazingly she can tell you every capital of every state in the United States. She can also fill in a blank map of the USA and get all the states in the right place. She can do some imaginative play, but will only play what she “knows,” like “school” or “wedding” or “church.” Ask her to imagine something different and she can’t.
When initially meeting her you might not know there’s a problem. She might ask you what you had for dinner last night, which is a perfectly reasonable question. But when you answer her, she’ll proceed to ask you what you had for dinner the night before that, and the night before that. THEN you know there’s a problem. Or you might know something’s wrong right away if she asks you, “What town does your house live in?”while looking up at the ceiling. She tends to mix up verb tenses and forms, for example, “yesterday we go-ed to the mall,” or “when did we went to the mall?” She speaks very loudly and has to be reminded constantly to lower her volume. Her eye contact is inconsistent.
She doesn’t engage in self-stimulating behavior (stimming) as severely as she used to. When she was younger she would flap and jump and sometimes spin. Now her stimming is subtle and more visual – she’ll intensely stare at something cupping her hands as if she wants to holds whatever it is, and her hands will shake, or she’ll point to something with her two index fingers and her hands will shake. She does this a lot when writing her homework. If we let her she would write a letter, put her pencil down, stim on it, then pick up the pencil and write the next letter. Homework would take FOREVER if she did that, so we have her at the point where every so many words or perhaps at the end of a sentence she will do this, and I only redirect her if it’s taking her a while to move on.
Her threshold for frustration is very low, and now that she’s in the tween years it’s even worse. She is becoming moody, bossy, even louder, and will cry at the smallest thing. As with many autistic people routine is EXTREMELY important to her. Change the smallest thing and we have a meltdown. When I say meltdown I mean screaming, stomping, slamming doors and crying. She used to bite, scratch and hit, but thankfully she doesn’t do that anymore as a result of a behavior program we used at school and home when she was three to six years old.
She’s not very affectionate, usually not liking hugs or kisses, but she loves to smile. Once in a while her affection pours out, when she’s excited, and then it’s very rough – her hugs can hurt! We have to be very careful with her around pets for that reason. We used to have cats when she was younger, and we had to keep them away from her because she’d squeeze them or pull their tails. Even now when we see someone with a pet we have to be very careful and very strict with her to “be gentle.” When she’s over excited it’s hard for her to remember and listen.
In the next month we’ll probably be having the “autism” conversation with her. There are times now that she recognizes she’s having a problem and will ask her little brother to help her. Both her siblings know she has autism, and my son especially is using the word around the house more often to express his frustration with her, “I wish I didn’t have a sister with autism.” This is quite appropriate, but soon she will ask, “What’s autism?” and I’d rather start to answer that question with the help and guidance of her teachers than be put on the spot by her. So next week when we sit down to have our quarterly conference, I’ll be asking for that help.
This is what autism looks like for US. If you have autism in your family, what does it look like for you?