Three parents share their experiences of finding out when their child had autism. Names have been changed for privacy.
My son, Maddox, is six and a half now. I think I started noticing he was “different” pretty early, like maybe a year or a year and a half. I would notice that he’d stare into the distance at random times, and it was like he was gone, and he wouldn’t respond to his name.
When he became a toddler, I noticed that he was developmentally delayed, but his memory was so sharp, and his response to music was crazy – like really impressive. He seemed so moved by music, but wouldn’t respond to basic conversation or direction. He could sing an entire song after hearing it once, but couldn’t engage in back-and-forth communication.
We started seeking speech therapy, because it was all the family would agree to, in terms of what “was wrong with him.” We got him into an IEP when he started school, so that felt really lucky. His speech is still kind of delayed, and I feel like he’s so behind in so many ways, especially socially, and yet I feel like there’s something so inquisitive and special and observant about him that I really have a hard time thinking of this as a disorder. I don’t think it’s just because I’m his mother, but sometimes it feels like this kid is just from another universe, a musical one, and we’re the ones who are wrong in it.
- Elsa, 38
We had my son, Eli, evaluated when he was three, and I thought that was pretty early! Other moms I’ve met in our autistic group in my town have said they actually had their kids evaluated at 18 months. One mom said she had her son checked out at a little over a year old.
I didn’t feel like there was anything “wrong” with Eli, except that he’d started talking and then one day just stopped. And he was using fairly advanced words… he didn’t start with things like “car,” or “cat,” he was saying things like “excavator” and “ambulance.” And then one day he just stopped altogether, and he just chose to communicate in non-verbal ways.
We had him evaluated and we met with a speech therapist, because that was really the only main observation we had that made him different. But around that same time was when the tiptoeing started, and then the headbanging. Oh, man. That was a total gamechanger for us, because that’s when my husband and I thought, “It’s autism. Has to be.”
My cousin is autistic, so I think I was well aware of that possibility. I’ve known that no two autistic kids are alike, so it wasn’t like I was expecting some specific behavior or outcome.
Eli doesn’t make eye contact even now, and generally doesn’t respond to the sound of his name. He doesn’t tease or laugh, but my goodness, he’s smart. He can recite all the countries and connect their flags.
- Dana, 30
I think our situation is so different from so many other stories I’ve heard. Kevin has always been exceptionally bright and he talks more than any other kid I’ve ever met. He will literally stop you at the grocery store and ask what your favorite color is, if you like hotdogs, or what you think the queen of England is having for dinner. He’s incredibly curious and inquisitive and more social than typical kids.
Even with what seemed like extreme intelligence, he wasn’t doing very well at school, and to make a long story short, we went to the principal and asked for assistance. He kind of brushed us off and said that Kevin probably just needed to improve his attention skills and needed to respect the teacher and his peers. I was like, “What kind of an answer is that?” A friend of ours, who’s a teacher, suggested that he was probably bored in his class and needed to be tested to move up a grade level. That made sense to us.
We switched schools after that summer, and the principal at the new school was incredibly accommodating. She helped guide us to the right people, and we got Kevin evaluated. Everyone else was shocked except us. I knew there was something that was up – it wasn’t just boredom or whatever else they said it was.
It’s frustrating to think that other parents have to advocate and fight so hard for their kids like this, and I’m such a supporter now for early intervention and treatment because I know how far along Kevin has come with everything. We had some challenges, but I’m sure not nearly as much as other parents have experienced, and I’d hate to think of families already going through these challenges on their own and having to convince others that there’s something that needs addressing.
- Liz, 35