Friday, June 15, 2012

For Autistic Teens Feeling Doomed or Broken

You are not alone. Many teens who receive an autism diagnosis feel broken, and suffer from pain of acceptance -- even to the point of suicidal thoughts. And the resources you need are not easy to find.

So we asked several adult autistics who were once autistic teens themselves: If you were in this headspace, how would you feel, what would you want people to say to you, what could possibly help? These are their replies.

Karla Fisher
I was angry the day I received my diagnosis. At first it just made me feel “broken.” People tried to tell me that I was the same person I was before. But those words did not make me feel better. Reaching “acceptance” of my label took me around eighteen months. There is very little written about this process that pertains to autistic people as our emotions do not neatly lineup in the way that Neurotypical people do (e.g., stages of grief).

As you go through this processing time, know you are not alone. Know that the prevalence for autism now is 1 in 88. That means almost anywhere you go, there will be others. We are here and we are a strong and capable people. We can easily be found online and perhaps even in your own community. Know that Neurotypical people (even the professional ones) make a lot of mistakes when trying to understand us. These misunderstandings are things that cause us to feel broken. Know that social skills are not the answers to a successful life. Seek Autistic Role Models and accept advice from those who support you as you are. 



Be patient with your own self during this time. It is okay to go through these feelings. It is okay to seek help. During this time you may go through a period of anger. You may wish that you could be fixed. But one day you will understand that autism is not a disease and that you do not need to be fixed. You will learn that advocacy empowers you to be the best person you can be. You will confidently accept your neurology and your place in the community as a whole and complete person.

Kassiane Sibley
I'd want to hear that I am not broken, and that those who think I am are so, so, so wrong. That anyone justifying poor treatment based on being different is a sack of shit (and yes, profanity did help). I would want to know about the autistic community. I would want to meet other autistics. I would want someone who mattered to me to tell me that all that BS in the media about autistics not having empathy, being burdens, being worse than getting struck by lightning is BS, and that the people promoting it are wrong,wrong,wrong.

When I was a teenager, autistics.org literally saved me. Essays by people like me, for people like me. People who were demonstrative about unquestioningly loving me. People who demonstratively loved me because of autism, not in spite of autism. Exposure to lots of autistic perspectives would have made me feel so much less alone.



Lydia Brown from her essay You Are Not a Burden
Your neurology is divergent from the accepted "norm" of human neurologies, but that's not a bad thing. You are okay the way you are. Your brain is beautiful.

You may learn differently than your peers, need certain supports, accommodations, or services in order to have full and equal access, think differently than your colleagues, communicate differently than your family members, or experience sensations differently than the other people around you.

But those differences are not bad. They are part of what makes your experience of life unique and beautiful.

You have the capacity for deep, unbounded empathy. You may be moved to action by egregious injustices, and you may be the first to speak up in the face of wrong. You may form brief connections with others that will impact them for a lifetime without you ever knowing, or you may find comfort and trust in only one or two friends over your own lifetime. You may take intense pleasure in solitude, and you may have the potential for wild creative exploits.

You will have struggles that non-Autistics won't face. And you will share some of your struggles with your non-Autistic peers. You may find community among other Autistic people, knowing that there are people with whom you can share space and communicate shared struggles and joys without ever speaking a word.

Your only debt to society is to change the world for the better, even if all that means is a perfunctory encounter with a stranger that leaves another's life a little bit better, another's worries a little bit less daunting and frightening.

Emma Apple
Being a teenager is such a difficult time anyway when it comes to self identity. I struggled immensely as a teen due to social pressures, I disconnected from many of my friends and went on a journey of self discovery, through my art, books and specifically a search for religion. It both consumed me (which was a good thing, for me, at the time) and helped me to the other side of that difficult time, but it was also very personal, so I can't say "do that."

The very best thing right now is to exposure to the amazing autistic community of powerful, whole, strong, supportive self-advocates. Even if you come from a neurodiverse family, the support system often needs to be outside the family and the family needs to accept that and work towards getting it for you in every way possible.

Carol Greenburg
I would want people to tell me the truth that autism is a way of being, not a disease; and that while it can cause difficulties, it is also probably the wellspring of my greatest strengths. I would want people to point me toward The Autistic Self-Advocacy Network (ASAN), and other sites where I can "find my tribe" (if I want a tribe, that is), and I would tell myself as many times as necessary that anyone who defines me as sick or broken is running their own agenda, whether they know it or not. I would give myself constant permission to set my own priorities and walk away from anyone who tries to undermine my power.

Tarrant Figlio
I would want to hear that I am loved -- no matter who I am, how broken I am, how horrible I think everything is, and how much trouble I think I am to my family. And to make sure I understand that I don't need to know WHO I am or who I think I should be, to be loved. And I don't need to UNDERSTAND that love or the "whys."

Lynne Soraya
In my case, I basically had to find my own way through it. But when I think about that time in my life, when I think about what I felt, I felt profoundly alone ... and deeply confused as to what to think or believe about myself. So, I guess the first thing I'd say is that people need to LISTEN. 



The people around me would often try to talk me out of my feelings, which to me only further blocked me from working them out. To meet this need, I eventually turned to writing. A piece of paper didn't interrupt, or judge me for my feelings. It didn't try to tell me why my feelings were wrong. When you see someone so close to you in pain, there's the impulse to step in, to try to reason it away. To try to make it stop. Sometimes though, pain can't be reasoned away. It has to be heard, talked through, often with questions. 



It all goes back to what I've written about before -- asking "Why"? What is the root behind it? Is it what they've heard? From whom? Or is it something they thought about themselves? 



Another theme in my journal I saw was a troubling one -- the tendency to compare myself to others and find myself lacking. I discounted my strengths, and amplified my weaknesses. The word "stupid" appears a disturbing number of times, and I don't think I was even aware of how deeply entrenched my negative self-talk had become. So, emphasizing strengths, I think, is very important. Finding ways to help the person use those strengths in productive ways that help others; that they can then point to and say, "I did that." Provide them concrete evidence that their self-talk is invalid.

One thing I can say definitely NOT to do, is to make light, or think that you can cajole them into feeling differently. In practice, it feels manipulative.



Medication can help, but has to be treated very carefully; and with awareness of the ways people on the spectrum react to such drugs -- which can be idiosyncratic. That only comes with a professional who is clued in and aware. It should not be handled lightly, but presented with a teen in crisis there may be too quick a response in that area.



Another very important point that I think needs to be covered is understanding what in their current life is making them feel most anxious. A lot of the times that I've gotten depressed, has been when I found myself up against some of the difficulties of being on the spectrum, and couldn't figure out how to address them on my own. The feeling of helplessness that comes with feeling that you don't have the skills to handle a situation that is critical for success can really drive some dark thoughts. If you can find constructive ways to coach them in order to give them the skills to address those challenges, it can take a lot of the fear away, and reduce the hopelessness.


A lot of my depression dealt with my desire to connect with others, and my inability to achieve that due to lacking the tools. I took all the rejection personally, and felt that it made me unlovable. The hopelessness of feeling that I was unlovable, and not knowing how to "fix" that had a great deal to do with the despair. When I finally accepted I was on the spectrum, I had a very dark period of depression, because I thought that the fact that the traits that had caused me the trouble were neurological (and therefore wouldn't change), meant that I'd be stuck forever. Until then, I'd always held out the hope that there would be some miracle treatment or counseling technique that would "fix" me and people wouldn't reject me anymore, and I wouldn't have to be afraid anymore. I though Asperger's meant it was the end of the line. It was anything but. Understanding Asperger's actually provided me tools to fix a lot of the challenges I was facing. It wasn't the neurology, it was not understanding how to relate to other people, or how they related to me.

Corina Lynn Becker
Suicidal thoughts come from being in so much pain that you don't know how to make it stop, you just want it to STOP.

What you need is to realize is that 1) people care about you and 2) You are not alone. You are not alone being a suicidal autistic. You need to know that it's worth it to be alive. You need to be actively trying to get better. Until you do, other people can push all the doctors and books at you that they want, and you'll just push it all and them away for being nosy busybodies. 


Paula C. Durbin-Westby
I will say one thing I would have wanted as a teen and that would be for people to NOT talk about my "issues" all the time. It would have made me feel even more like I was "broken." I would want a careful balance of showing support and caring and encouragement without referring to "my problems" and also showing me examples of Autistic/Asperger's/whatever my official diagnosis is people who are just real people. So, in that case, real TEENS, and NOT real 60 year olds who are successes, or real 25 year olds who are successes, but Autistic teens who are living their lives the best they can. Some of whom can be found online. People who can sensibly, Autistically, lead teens in support groups that have a a careful balance of showing support and caring and encouragement AND talking about issues with each other, if they want to, with just listening and not having to TALK being a legitimate option.

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If you are having suicidal thoughts: that is an emergency, and you need to get to a safe place. If you do not feel comfortable reaching out to the people in your life, resources such as Samaritans (samaritanshope.org) have hotlines for teens contemplating suicide for any reason. You are worth that call. You are not alone.

For context, this post evolved from the needs of a very real person, a teenage girl in crisis, who was recently diagnosed and needed support. The replies above are all from females because that is who responded to this call for help. Their responses were so thoughtful we decided to share their words and advice more widely. It is extremely critical that young men also have role models and resources, and we are actively seeking more male contributions for TPGA readers.