My son is obsessed with trains. From the time he was two years-old until now (he's 16) he has obsessed about trains, begged to ride the subway, watched train videos, operated his own train simulator and now he is a proud member of the Union County Model Railroad Club in Union, New Jersey...well, you get the picture.
I know that I am not alone in trying to manage an obsession or perseveration in a child with autism. I know parents whose children are obsessed with fish or clocks or conveyor belts. I know one child who is obsessed with cardboard boxes. He has driven his parents crazy by collecting boxes, stacking boxes, asking neighbors for boxes...they are at their wit's end.
The question is, how much is too much? I have had experts tell me to simply "extinguish the behavior" first by limiting, then ultimately eliminating the behavior altogether. But how can you "eliminate" the very thing that makes a child feel safe? Their peace? How could you "eliminate" their safety net without completely destroying the very thing that makes them unique? The answer is, you can't of course, but then what? How do we manage these "odd" behaviors? How do we bring a child from their own world into ours?
Five years ago we were in the living room when Jack started to talk about trains, "Mommy can we go to Princeton tomorrow to see the MARC trains from Maryland?"
I rolled my eyes, his brother Evan literally left the room. But my fiance did something no one had done before, he replied, "Jack, why would a MARC commuter train from Maryland come all the way up to New Jersey?"
Jack replied, "New Jersey transit runs them once a year the Sunday after Thanksgiving as a holiday extra." My fiance thought for a moment then said, "No Jack, I don't think the MARC train ever comes up here, I think it ends in Martinsburg, West Virginia."
And the two of them proceeded to have a lively conversation about the MARC train. Turns out the MARC train DOES run all the way up to Princeton the Sunday after every Thanksgiving. Who knew? Well, Jack.
I have never seen Jack so happy or engaged as he was with my fiance that afternoon. For the first time in his life, someone validated his interests and had a legit conversation with him about trains just like anyone would converse about politics or the weather. For Jack, it was the day he became a person.
I realized in that moment what a horrible mother I had been. It had never occurred to me that Jack's obsession might be an actual topic worthy of discussion or that some people (not me of course) also loved trains as much as he did. So I started to give his obsession more respect. I changed the way I conversed with him. Whenever he spoke about trains, instead of pooh-poohing it or literally telling him to be quiet, I asked him questions about the locomotives, the routes, the other "railfanners." He started a YouTube channel of train videos (subscribe to "thecooltrainguy" if you want to totally make his day) and made a few friends who were also interested in trains. He joined the Union County Model Railroad club. We started going to train shows and events. And he started to blossom. He started telling me his feelings - "Mommy, I'm so angry that they treat me like such a baby at school" or "Mommy, I'm so angry that Evan treats me like he is older than me, when I am the older one."
"Mommy, I just wish the whole world liked trains as much as I do"
and the one that broke my heart, "Mommy, how come everyone in the world knows what to do except for me?"
It was a window into his soul. For the first time he started talking, hanging out with us as a family, making jokes and watching "Family Guy." He started trying. Once he felt validated and respected, then he felt safe enough to venture into our world.
This is what I would say to parents. I know it is counter-intuitive but with autism I think it is very important to join your child in "their world" first so that they feel deeply understood. It's not enough to be permissive ("We let Connor line up his cars because it makes him happy") and then go about your day. That's not the same as taking a real and authentic interest in their interests. You have to engage with them about their specific interests for "reals". They know when you are faking. They know when you are disapproving. The trick is to engage in real, authentic conversations about clocks or conveyor belts or cardboard boxes, learn as much as you can from them (trust me they will know WAY more than you ever will about the topic) but still set limits. For instance you can say, "I know you want to stack your boxes all afternoon and I totally get it, but that's just the way life works. I love to put on makeup and I don't get to put makeup on all the time, even though I enjoy it and I'm an adult, I can only do it for 30 min in the morning and 30 min at night. How about if you stack a few more boxes until 4:30 and then start your homework?"
The most important thing is to VALIDATE and not PLACATE. This is key. Once your child feels understood, you will be able to draw them out and they can begin to learn other skills. You have to give them their respect, give them their due in order for them to be open to the "rules" of our society. Otherwise they are completely shut down and you will not be able to reach them.
I promise you, if you take the time to make your child feel understood, make them feel like their interests are just as important as anyone else's they will start to trust you and be more open to learning new skills.
Because after all, what does everyone want in this life? To feel understood.
Leslie Crowe, is a single mom of two boys (one with an ASD), and Co-Founder of NeedQuest, a local website and event company that connects families with children with special needs to providers throughout New Jersey. She helps families find special needs schools, special needs camps, speech therapists, occupational therapists and other special needs resources, as well as hosting live events for the community.