”Do you feel like, because of my ASD, I have restricted interests? Could you maybe write a blog post about how (if I do) I have restricted interests?”
This was a text message that I received from my daughter this week. I asked her is SHE thought she had restricted interests. Her reply... “I completely believe that I have restricted interests.”
She is right. She does.
It is no big shock to me, however, when my daughter becomes obsessed with one particular activity, or acts disinterested in activities going on around her, or subjects being discussed. I (and she) understand that not everyone gets where that comes from, or that it is not something personally directed at them, if they are feeling negative effects from it. So... in an attempt to self-advocate, and help other people around her to understand how, and why, she can seem so “obsessed” or “detached” from things that might be important to the other people, she is asking for my help to explain it. Let me just say how huge that is, in itself... the fact that she is asking for help. That just doesn’t happen very often, but she is desperately trying to fit in to an independent, ”adulting” lifestyle, and it can be pretty overwhelming.
So... let’s go back in time, because understanding that my daughter has been this way her entire life... that it has never been any different... and that, despite her best efforts, it is unlikely to change... well, my hope (and hers) is that it may help others understand her better, and that people will not take her behavior around her restricted interests personally. She wants, so desperately, to please people. The worst thing in the world, for her, is when someone appears to be disappointed in her. I am so proud of her for working to create awareness around Autism Spectrum Disorders, especially as it pertains to her. She posts about ASDs on her FaceBook page, often. In fact, she posted about this subject, and has given me permission to use excerpts, from her post, in this blog post.
Where should I start? She is 24 years old, and restricted interests has been a lifelong characteristic. “Uh Huh.” “Oh.“ “Hmm.” or silence. That is how my daughter communicates (or doesn’t), when something is going on around her that she is disinterested in. But, why is she disinterested? It can seem like she is disinterested in everything sometimes.
She. Doesn’t. Understand.
She. Can’t. Process. That. Fast.
She. Is. Overwhelmed.
That’s it. That’s really all I should have to even say about the subject. People should be satisfied with those answers, as far as I am concerned... but, for some reason, people just cannot seem to wrap their heads around the fact that my daughter has a disability that truly does limit her ability to function “neurotypcially” in a “neurotypical” world... whether she looks disabled or not. Grrrrrrrr!!
Okay... vent over. Let’s break this down:
“Restricted interests (RIs) in autism spectrum disorder (ASD) are clinically impairing interests of unusual focus or intensity that are a subtype of the restrictive and repetitive behaviors symptom domain of ASD” (American Psychiatric Association, 2013).
“We propose a nexus model of RIs as a brain-based developmental bridge between social communication impairments and RIs in ASD. The nexus model emphasizes that RIs may be conceptualized as a preferred mode of engaging with the world.” (Baron-Cohen et al., 2003; Klin et al., 2007)
What does this mean, in a nutshell? Restricted interests are a coping mechanism! Did you get that? Restricted interest are a coping mechanism!
When my daughter was a little girl, she had no more than five activities that she would participate in. If a new activity was introduced, that caught her attention and she adopted it, an activity that was previously part of her world would promptly go away. For example... when she was about 4 years old, she loved her ”Blues Clues” video, her “Winnie the Pooh’s Great Adventure” video, reading books, and coloring. That was about it. When she was “having a hard time,” as we called it (and still do), when she was overwhelmed, she would watch her ”Blues Clues” video over and over and over again. It soothed her. It was a coping mechanism. I used to feel guilty about letting her do that, but I got over it pretty quickly, when I figured out that it made life easier for her. But, as she go a little older, she discovered “Power Puff Girls.” Something had to go. To my dismay, it was “Winnie the Pooh’s Great Adventure.” (I liked it better than ”Blues Clues,” and let’s face it, if she was watching “Blues Clues”... so was I.
Restricted interests happened with food, also. It was the ultimate “comfort food.” Think about it. When we are stressed, emotional, or overwhelmed, most of us are comforted by eating food that is indulging, or reminds of our mother’s cooking, etc. Think about how it must feel to not understand the world around you, most of the time... to constantly be a step behind, trying to process what you see or hear. Only liking four or five different foods, and eating nothing else, gave my daughter a sense of comfort and predictability. She didn’t have to try to process all of the choices that were given to her, or worry if something was going to taste good, or what the texture of a food was going to be, if she just ate the same few things. (If you are thinking, “Every kid does that,” go read my last blog post.) So... she would eat peanut butter and jelly sandwiches, chicken nuggets, cold cereal, broccoli, and cantaloupe dunked in ketchup. When she decided she liked bananas... cantaloupe dunked in ketchup went away. (Thank Gawd!)
Over time, the fact that she has restricted interests has never changed. It has just evolved. Her food likes have expanded, more, since she was a little girl. But, honestly... not much. She still sticks to the a limited number of things, for the most part. Although, she is more easily prompted into trying or eating something different, than she used to be. But, left to fend for herself... there is little variation. Something new comes in... something old goes out.
This is the way it is. She is unapologetic. I am unapologetic. It has taken both of us a long time to get to the point that we just don’t give a shit what people think of how my daughter is effected by ASD. As it turns out... it is empowering for my daughter to understand her limitations, why they exist, and that they aren’t going away. It has given her a voice. She is more confident. She is living her life. But it is difficult, when others can’t see it, don’t want to see it, or don’t take the time to pay attention and understand why that my daughter is not disinterested, because she doesn’t care about a person, she is disinterested in a particular subject, because:
She. Doesn’t. Understand.
She. Can’t. Process. That. Fast.
She. Is. Overwhelmed.
I am going to leave you with an excerpt from my daughter’s recent FaceBook post. Here is her plea... in her own words:
“I have recently tried to put in as much effort as I could muster into something that I’m not interested in, but the other person is VERY interested and invested in it. I’ve asked a few questions here and there, I’ve downloaded an app to look further into what they were talking about... In my eyes, that seemed like enough energy for me to expend on a topic that I’m not interested in. In their eyes... it’s the opposite, or they have led me to believe that it feels the opposite. It’s personal. It’s demoralizing. And I get that, of course it is! But they need to understand how my brain works to the fullest extent, and that it will likely never, ever change. It’s a unique part of me and I don’t want to change those unique parts about me. I can foster my interests and grow upwards, should I choose to act on them, into an amazing career or whatever I choose it to be.
Everywhere that I have read (so far - the internet is overwhelming with information sometimes) has blatantly stated that, yes, in fact, restricted interests/behaviors is a HALLMARK symptom of Autism Spectrum Disorders.
But I don’t need the internet to tell me how I feel.
I KNOW that I have restricted interests, and yes, it can make communication EXTREMELY hard. Finding a common ground is something I’ve struggled to put together, so I need help from YOU. Pay attention to our conversations. No, like REALLY pay attention. If I start saying “yeah” or “mhm” a lot to something that you’re talking about that isn’t just a “the weather’s nice outside,” comment, PLEASE, for the love of all things that are still holy in this world, ASK me if I understood what you were talking about. It’s all about prompting my brain to ask the questions that I may be thinking about, but won’t. If I didn’t understand, then please break it down, make it simpler. DON’T dumb it down. I’m not stupid. That’s not the way to go about it. Ask if I am able to understand the concept of what you are talking about. Then, go from there.
If you are someone that talks fast, forget holding a conversation with me. Speak SLOWER and I will probably be able to process at my normal speed.
I understand that accepting that I have restricted interests is hard. But please, try to be positive and welcoming about my interests instead of accusing me of not being interested in whatever it is that you’re passionate about. I’ve been trying.
No, you CANNOT fix a person with ASD’s restricted interests/behaviors, but you CAN help them and guide them to a happy, blissful place where they are doing what they love.
ANY relationship should be able to have two people that discuss interests and be able to say “that’s awesome, I’m so proud of you for achieving your goals!” or “wow, I didn’t know that about your interest!” without it being negative.
Thank you for coming to my TED talk.”