I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.


71 thoughts on “I Was One of the Scary Kids

  1. Pingback: We’re all a little scary « northup news

  2. This is beautiful, and is a perfect response to that “other” post. I feel honored to have read it, and I will share it widely. Thank you.

  3. What a spectacular post. You have hit many, many nails straightforwardly on the head. I myself was a scary kid, and my own kid was VERY scary, and in fact I did send him to a wonderful, nurturing, and sane therapeutic boarding school that helped him develop the life skills and most importantly, the self respect that he needed to not only survive but to flourish: he is now working on his Ph.D in a field of science that I can’t even understand! We MUST be strong, strong advocates for ourselves and our “weird” children, now more than ever in the face of this new demonization of our dear odd selves.

  4. Thank you for this. I am sharing this with my son’s teachers, with family, friends, and neighbors. You’ve explained in ways I never could. So grateful! I wish you well!

  5. Pingback: For the Scary Kids « Koffeefrkeleven's Blog

  6. My oldest child, now 38, was a scary kid. He was my first. I was new at being a Mom and Asperger’s wasn’t even acknowledged in the 1970’s. We went to therapy. His wonderful principal and I talked for hours about my brilliant but unruly son. What to do? Therapist after Therapist, cover the words in his books, take away his toys, give him his toys, involve him in sports, punish, set guidelines for behavior. Make his actions meet “appropriate” consequences. Nobody told me he didn’t know what a consequence was. Now, as an adult, grandmother, my oldest child has cut me out of his life. He is lost to me. My loss is so painful. My life is great, my family is wonderful, but there will always be a hole in my heart for the son I love so much. I mourn for the living, looking each day for some sign that he may connect with me again.

  7. Well said! As the nanny of three “scary kids” I feel that their episodes are just as scary for them as the are for the Looky Lous that judge them. They are scary in that them can’t find any other way to express the over stimulation that they feel, be it happy or sad or angryor just plain frustration and feel they do!Sometimes more so than the rest of us “normies”.Thanks for this!

  8. Thank you for writing and sharing this, for your thoughtful articulation of an issue that is rarely described so well, so objectively, and with such compassion. Ever since I heard the first description of Adam Lanza, I have been worried about how it would further stigmatize the “scary kids” and others, like a friend’s 13-year-old son who has Asperger’s. Like many other readers, I will share it on Facebook, and I hope it will be widely read.

  9. Thank you for writing this. I shared it on my Facebook because people need to read this and understand, especially as a counter to some of the other awful stuff being written. I had to put up with so much BS because of my son’s issues, and the only way I could shut them up was to snarl that I was a former student of Bill Kinkel’s, and comparing my son to Kip Kinkel was extremely offensive.

  10. I read this and I see reflections of myself in the past. I envy you your mother. She clearly gave you as much love as she could, even when she was afraid. That is amazing.

    I was a scary kid too. I too am living as they swore I never would. I know others. Thank you for giving voice to some of the why too, articulating what a part of me still cannot.

  11. Thank you. I have a 25 year old daughter with and ASD, who has been a “scary kid” and you helped me to understand things from her perspective. She is still not able to communicate her reasons and she doesn’t have your abilities, but I see her learn and grow all the time. Like your mother, I fought pressure to place her in a residential school. I believed that being part of a loving family in her best interest and she still lives with me because I don’t trust group homes to meet her needs and to keep her safe. You are a brave woman to put yourself out there for the benefit of others and I commend you.

    • Thank you. I’m glad your daughter has a mother willing to watch closely to see her skills grow. We all learn and grow, no matter what our disabilities are, and too often the fact that someone doesn’t gain skills/grow skills at the same rate means people don’t pay attention. I hope someday she can communicate in a way that is best suited to her needs and abilities- you don’t mention her communication type, but there are all sorts of ways- what it was like, but even if she doesn’t that’s ok. I’m far from my writing skills verbally myself.

  12. To be clear: Scary Kids have no particular diagnosis. Being a scary kid has to do with the level and intensity of your behavior, not what your diagnosis is.

    There are a lot of highly stigmatized diagnosis out there unfortunately. But a scary kid is more than those diagnosis- it’s behaviors that go above and beyond the diagnostic criteria to a point where people are actually afraid of what they see/the behaviors themselves rather than of the diagnosis or the context. I’ve even met people with one of the less stigmatized (but still stigmatized) dxs who were scary kids, both in the MH and DD world.

    There’s stigma in all areas of the DD/MH world. But being a scary kid is a step further than that. Even other people in the DD/MH self-advocacy world are vulnerable to seeing you as that scary kid when you disclose. Even people you share a Dx with.

  13. Thank you. I like your mother have been fighting for my child the “scary kid”. It is not easy to do when as a parent you know what is right but because you don’t have a degree people tell you, that you are wrong. Because of your writing, I am positive I am doing right for my child.
    Thank you for your strength and courage.

  14. It’s been interesting to watch two main assertions coming out of the mental health / human service community: one of the need to increase access to mental health services, and one that we must stop stigma associated with mental illness. You allude to this in your post, noting “When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion and false equivalence, we are told that we are calling other scary kids lost causes.”

    Whether or not mental illness, developmental disability, or any other factors contributed to the tragedy or not, do you believe it perpetuates stigma to use this moment, while we can get national attention, to push for greater access to mental health services. Of course that message must come with the facts — that people suffering from mental illness are not more likely to to violent (though that risk goes up with substance use and/or lack of treatment), and that people with mental illness are more likely to be victimized.

    I don’t see the call for greater access to mental health services as perpetuating stigma, so long as it is done thoughtfully, and I understand the concern that mentioning the need for greater access seems to imply a connection to violence, but think we can get to a substantive point where we can use this moment to both push back on stigma and fight for access.

    I’m just wondering your thoughts…

      • So you’d rather not see mental health advocates saying things like “We don’t know if mental illness played a factor in the tragedy in Connecticut. But we do know that while people with mental illness are not more likely to be violent, other past tragedies could have been prevented with increased access to mental health services. As we think about what will make a stronger, safe community, we must invest in a stronger mental health system.”

        I’m still not convinced that talking about expanding access to mental health services at a time when the public and elected officials are taking note does more harm than good so long as it is articulated in a thoughtful way.

  15. Thanks for sharing this. I work with people with a range of social challenges, with a mix of different manifestations. It’s not hard to see from my admittedly fortunate vantage point that kids who are understood well, who can be helped to develop certain skills (perspective taking, self-advocacy, flexible/abstract thinking, problem-solving, etc.), often become considerably less “scary.”

    I’ve also seen many typically developing people without a diagnosis mature in adulthood to become better and better at self-regulation.

    Some people will certainly continue to judge a formerly scary person negatively, no matter what. But I also hear positive comments pretty frequently from teachers, administrators, parents and other kids indicating they have seen changes in a formerly scary person.

  16. You did a beautiful job of articulating how you felt as a “scary kid”–I am sure you have helped a lot of other misunderstood kids with this post. I don’t know you but I am very proud of you for all you have accomplished!!!

  17. I am glad your mom believed in you even when she was scared. I was a strange kid, my kid was strange and scary. I was encouraged to drug her so she would fit in. I freed her from school and helped her figure out what she was good at. In many ways, she is now my heroine. Different, strong and fearless both for herself and others.

    Children grow at different rates and in different ways. If adults weren’t so scared of different, we wouldn’t find so many kids scary.

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  20. I love reading this! As a preschool teacher who encountered “scary kids” before their parent even acknowledged it, it’s a good change in perspective. Some of the kids I had in class were too young to say what they need, and it was a labor of love to help them. But I always feel good whenever I see a special person grow up and put into words what they needed to say.

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  22. I don’t disagree with your main point. Certainly the actions of children should never, ever be assumed to say very much about them as adults. And of course people with disabilities or with psychological conditions should not be discriminated against or scapegoated.

    However, you should be aware that your statistics for incarceration are irrelevant if presented as stand-alone figures. The prevalence of autism is about 62 in 10,000. That is 0.62%. As such, 5% is a MASSIVE proportion. It is at least 8 times greater than you would expect if autism had no effect. You don’t say what diagnosis specifically that statistics refers to. But even 1% would be about twice the expected number of people in prison than there should be.

    Now granted there are many, many reasons this might be the case – maybe they are more likely to be convicted due to prejudices people have etc. The point is only that, actually, you are at greater risk of landing in prison than a person without such a diagnosis. And that you ought to quote statistics with an appropriate control to compare to in order to avoid misinterpretations like this.

    • These statistics are for Mental Illness in General, not autism (a developmental disability) or any specific diagnosis. As about 25% of the population in general falls into the category covered by these statistics, 5% is a minuscule percentage, especially since not all of them had their Dx as a major factor in the commission of their crime.

      Please follow the links provided to see the studies. Many studies on SMI and Jail use a 1 in 20 headline instead of the 5%, but it’s a standard citation in the field, and is backed by the NIH.

  23. As someone who has defended the article in question and written about my son’s mental health issues (which are relatively minor) and my worries over them (which, my being a mom, are sometimes blown out of proportion), I really want to thank you for this corrective. It is the sane kind of thing I tell myself when I am trying to calm my anxieties (I have some mental health issues, too) but it helps enormously to hear it from the “kid’s” point of view. And I take the implied rebuke to defenses of that article seriously. Thank you, thank you, thank you.

  24. Thank you for having the courage to post this, on behalf of so many of us with mental illnesses who have been hurt by these stigmas. I still fear outing myself about my diagnosis, and have had trouble articulating to those around me what is so disturbing about some of the recent dialogue. I admire you for being brave enough to write this and be an advocate. I wish all the best for you; continue to be strong.

  25. Savannah, Thank you for posting your truth. I was probably a scarey kid, too. Now I am a mental health professional. I sometimes am sent middle school kids to assess. Most of the time they are fine an the school is failing them. Seldom am I worried they will harm anyone. Rather, they are likely receiving some harm – usually bullying. Sigh.

  26. Thank you so much for sharing this. I hope that stories like these will change the way the world treats the “scary kids,” so that none of them have to experience the kind of stigma that so many face now.

    • Also… congratulations. It’s wonderful to hear about how you’ve built your life up, piece by piece, about your accomplishments and your climb to adulthood. I, too, took a rocky road to independence (dropped out of college due to self-care failure, blundered through years of untreated mental illness, etc.), and I’m always happy to see others successfully making that journey.

  27. Pingback: [Kerry, James and Darwin] Articles that you should probably read. « Believelands

    • All the posts on this blog are public, and I have an understanding that this means that people may and will link/share it. My only stipulation is that there is at least a link back to here, which shouldn’t be a problem with facebook shares. 🙂

  28. Reblogged this on Spectrum Perspectives and commented:
    This is such a powerful post, and something everyone who works with children, especially special needs children should read. Parents too, because we don’t KNOW what our children are feeling, special needs or not.
    What’s really scary? The stigma we apply to people who need help, ESPECIALLY children.

  29. Pingback: I Fear for My Fellow Autistic People: On Media Misrepresentation | Paginated Thoughts

  30. Pingback: A documentary about “scary” kids scares me on behalf of the the kids. | Paginated Thoughts

  31. Pingback: Я была подозрительно-ненормальным ребёнком

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