Sam and his family have come a long way in 12 years — from the first signs of his unique intelligence to his violent tantrums and urgent need for order. Diagnosed with oppositional defiant disorder and ADHD early on, Sam seemed to progress, but the tantrums worsened until a particularly violent outburst forced his parents to seek in-patient treatment. Finally, Sam was diagnosed with autism spectrum disorder while in the hospital, and a path to more effective care opened up for the family. Sam and his mother Mara sat down to share their story, and the hope they now feel about his future.
Tell us a little bit about yourself.
Sam: I am Sam, I am 12 almost 13. I am from Brooklyn and a really like doing athletic stuff.
Mara, can you tell us a little bit about Sam?
Mara: Sam is an extremely interesting kid. When Sam was born, he had club feet, and we knew we had to get him into early intervention right way to do physical therapy and then we started noticing other things. Like he didn’t make eye contact and he was a pretty cranky baby. And then he hit his terrible twos and they continued well beyond the age of two. We knew that he was really bright but he just seemed out of sync with everybody. Instead of playing with cars like making up a game, he would line them up according to size or color. When he got into school, we realized he would need some extra support with social skills and to learn how to manage his anger. We realized there was a lot going on and we weren’t really sure what the meaning of it all was.
Did you get a diagnosis of what was going on?
Mara: It took while for us to get the right diagnosis. When he was little we realized he had sensory issues. When he was six we had a neuropsychological evaluation and they diagnosed him with ADHD and noticed that he had some anxiety. And they said he had traits in common with kids on the spectrum but they didn’t give him a definitive diagnosis. They did diagnose him with oppositional defiant disorder. Then as time went on, we had him start on medication and got him involved with cognitive behavioral therapy here at the Child Mind Institute. When he was around 10 years old, he was diagnosed with autism spectrum disorder. That was really helpful to finally get that piece of the puzzle in place because it gave us a really good framework.
Sam: Hey, Mom. Can I just say something? We found out this year that I have dysgraphia.
Mara: Oh yes, he has dysgraphia also. That was yet another piece of the puzzle. He also was diagnosed as an infant with developmental apraxia, which is a speech issue so he had a very hard time learning how to speak.
What was all this like for you Sam?
Sam: From what I learned in my experiments, being on the autism spectrum and also having developmental apraxia, those aren’t good combinations because people mostly don’t understand you in both ways.
Mara: So people misunderstand what you are saying and they misunderstand your behavior also.
“My favorite things about CMI is the fact how much it’s impacted my life in a good way.”
Mara, can you tell us what it was like to not know what you were experiencing with Sam?
Mara: When Sam was in grade school, life became really challenging for him. He was being very challenged by the social situation in school, and he was kind of imploding under that pressure that he felt at school and with friends. That would come out through explosive tantrums. We knew we had this really smart, sweet kid who would suddenly go from zero to 60 and we couldn’t understand why. My husband and I were continually second guessing our selves as parents.
Sam: (Putting arm around mom) I’m sorry I did that to you guys.
Mara: That’s okay. It was very frightening because we couldn’t understand what we were doing wrong. We didn’t know how things were going to turn out.
What was it like to finally get the right diagnosis?
Mara: Sam needed to be hospitalized when he was in 5th grade. His psychiatrist here at Child Mind Institute and his behavioral therapist helped us find the right hospital setting for him. It was once he was in the hospital and under constant observation that they were like “of course, he’s autistic”. What was great was, once we got that diagnosis, his service providers were able to adjust his treatment plan and that made a huge difference. They were able to give us better training for how to parent him and they worked with his school to help his teachers and his team at school to work with him more effectively.
What was all this like, Sam? Did you ever feel scared?
Sam: I don’t really know the best way I can explain this but it was a really tough time in life for me. I didn’t know what I was supposed to do.
Mara: Did you feel like things were happening and you didn’t know why they were happening to you?
Mara: To me it seemed like you wanted to control what happened to you, and when you couldn’t, that was really scary for you.
Sam: Yup. Exactly.
Mara: Do you remember some your bad tantrums and things that happened?
Sam: The tantrum that triggered that I had to go to the hospital? It’s a little embarrassing, but at the top of the stairs we used to have this bookcase. I just pushed it and knocked it down the stairs.
Can tell us an example of something that used to make you really worried?
Sam: Okay. One thing that really caused me to worry was like when I thought that a friend was going to do something I really didn’t want them to do to help me. One of the things that happens to kids on the spectrum is that they want things a certain way. So if a friend didn’t do something I wanted them to when I was younger I would get mad at them.
What does it mean to you to be on the spectrum Sam?
Sam: Now I see it as being really unique. I almost think that it helps me be a creative thinker. Like right now, like the situation that has been going on recently is the only disability that’s an issue right now is puberty.
Mara: “Who are you trying to be like?” Sam: “I’m trying to be like the flexible, smart guy not the rigid, dumb guy.”
Puberty is a big issue no matter who you are. It’s tough, I’m sure.
Sam: Too many hormones can make somebody act not himself. When I’m feeling confused and everyone saying things that don’t make sense then I go in a quiet place and contemplate about it.
What are you learning here at the Child Mind Institute?
Sam: I say this a lot and sometimes to Tiffany who works with me at school that Tiffany changed my life. And do you know who trained Tiffany? Mandi and Jamie here at the Child Mind Institute.
Mara: Since we’ve been coming to CMI there’s been a lot of emphasis on teaching Sam strategies for socializing, social thinking, lots of problem solving skills, and learning how to identify his feelings. My husband and I were coming in for training sessions and that certainly seemed to be helping us be more confident and effective parents. But then when Sam turned 11 or 12, I noticed him suddenly on his own starting to incorporate all of these skills and ideas. In one session when he was working with Mandi, they worked on trying to talk about something the other person was interested in. On the way home from the session that day, Sam asked me how my day was.
Sam: I think I should do that more often.
Mara: I think you should do that more often too. And actually, we do talk about things that I’m interested in more. Our conversation is more natural. We don’t have a topic that you just want to talk about. We can talk about whatever is on our minds at the time. So that’s more comfortable for you.
Mara: Who are you trying to be like?
Sam: I’m trying to be like the flexible, smart guy and not like the rigid dumb guy who everyone hates.
Mara: So how would you describe yourself now?
Sam: Smart, really active, funny, kind and also creative and also crafty.
What’s your favorite thing about CMI?
Sam: My favorite thing about CMI is the fact of how much it impacted my life in a good way.
Mara: Do you feel safe here?
Sam: Yeah. I’m glad to go to this place. I’m really glad now that I think about it because these people are experts in dealing with people like me. I feel understood here no matter who I work with.
Mara: I am having such a great time with Sam. First of all, I’m happy that he’s in school and he’s doing pretty well. He likes to be there and he’s making friends. I love that his true self is able to come out now. It’s much more about who his essential character is and living life from that energy. And he is a really funny guy and a very empathetic person. He likes helping the younger kids at school. I just see so many things transforming for him and his life. This is what you want for your children. I now have a sense of a bright future for him whereas I had no idea what his future held for him. I thought he could just as easily invent the next iPhone or go to jail. It literally could have been either one. And now I’m thinking the next iPhone is in his future. I’m really happy about that.