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The Autism Spectrum According to Autistic People

Autism neurodiversity

My Son Took His Life at 15. Here’s What I’ve Learned. #NoDejahVu

Editor’s note: This article is day 2 of NeuroClastic’s partnership with BlackLivesMatter757 on #NoDejahVu #SelfieForSuicidePrevention campaign and is written in solidarity and support by Beth Tolley, who serves on the Board of Directors for NAMI Virginia. Featured image is a drawing of Dejah Jones. You can learn more about this campaign by clicking here.

My son Craig took his life when he was 15 years old. The devastation of his death and his continued physical absence in my life is beyond description.

Craig was a sweet, kind, smart, creative, loving child and teen. And he was a child who struggled with his thoughts and emotions. When he was seven years old, he began to have “rages” at home where he would scream at us and destroy property (electronics, glass doors on furniture, his walls).

He had several “labels” and diagnoses over the next 8 years, including attention deficit hyperactivity disorder (ADHD), anxiety, depression, dissociative disorder, schizoaffective disorder, and bipolar disorder.

My husband and I searched for answers to why our precious, loving son would suddenly have hateful rages. Craig was hospitalized eleven (11) times, sometimes for a day, one time for 3 months.

When he was in ninth grade, a three month stay in a psychiatric hospital was followed with three months at the United Methodist Family Services residential services, for a total of 6 months living away from home.

Things seemed to be worlds better for Craig and for our family after those 6 months. We had our first family vacation in years. Craig made many friends, good friends. He did well in his classes. He attended Homecoming and the Prom. He completed 10th grade without any further hospitalizations. He had a job. He learned to drive.

And yet, he continued to struggle with unwanted thoughts and emotions that made him feel like he was not in control of his life. He was struggling with the realization that he might be gay. My husband and I assured him that we loved and accepted him no matter whether he was gay or straight; however, this was the 90s when people were much less accepting. I can imagine that he was afraid of what others would say.

An Average Day with a Tragic Ending

A week after the end of his 10th grade school year, on a night that seemed no different from many other nights, Craig locked himself in his bedroom and ended his life.

Though he had talked about suicide from the time he was very young, and we worried about the possibility, nothing could have prepared us for the harsh, final reality of him killing himself. We didn’t know until later that Craig had called ROSMY, an organization for youth to safely discuss sexuality and gender, the day that he died.

A Journey to Understand

In the 22 years since Craig’s death, I have learned a lot about mental health, mental illness, the neuroscience of brain development and functioning, and about effective and ineffective ways of supporting children and young adults.

I’ve learned so much more about neurodiversity, including autism and ADHD especially from neurodivergent adults. I have seen the unnecessary toll the deficit model of disability and an ableist perspective take on so many individuals.

I’ve worked through the devastation of his suicide to get to the point that I can remember all the good times– all the joy Craig brought to our life and all that he taught us. Our compassion expanded as we learned so much from working hard to be the best parents we could be for Craig.

That said, I can still be transported to the terror of that night and to the enormous ache of Craig’s absence.

In Search of Insights Toward Prevention

I have considered over the years what I could do differently and what I could say to others that may be helpful in preventing suicide. Here’s where I am:

1. I would encourage parents, grandparents, guardians, and all persons important in the child/teen’s life to love them unconditionally. Do that by avoiding methods of addressing behavioral concerns that involve rewards and consequences – because these methods tell kids that they are loved only if they do what the adults want them to.

2. Reject the deficit model of disabilities and differences. Embrace the social model of disability: what makes someone disabled is not their medical condition, but the attitudes and structures of society.

3. Develop, invest in your relationship with your children/teens. Listen, listen, then listen some more. Listen to understand what they enjoy, who their friends are, what they are proud of, what scares them. Kids are quick to feel dismissed if they don’t feel heard; and kids don’t feel heard if they are not given full attention and if their communication is met with judgement, vague advice, dismissal, and toxic positivity rather than empathy and support.

4. Be prepared to calmly and supportively discuss topics that perhaps were forbidden topics when you were growing up and topics that may make you uncomfortable.

5. Parents, along with all teachers, principals, and anyone in positions that impact other human beings need a basic understanding of the neuroscience of brain functioning. This is important to know how best to support an individual depending on their current brain state. Someone who is in a survival mode.

That is to say, their brain/body regulatory system has detected real or perceived danger which results in the most primitive part of the brain “being in charge” does not have access to the most developed part of the brain that is responsible for thinking, planning, impulse control and other complex cognitive skills.

Reasoning with a person in this state is pointless. Kids, teens, and adults need to know that they are safe, they are loved, and they have been heard. They need to know that if they will be accepted by their parents and loved ones for who they are, whether that includes neurodiversity, a different gender identity or sexuality, or something as simple as a different life goal or path from what you had anticipated.

Suggestions for Supportive Care

To support mental health and prevent suicide, I offer that following suggestions based a combination of experience and research.

1. Love your child with all your heart and soul – unconditionally. Do not be swayed by advice that doesn’t feel right to you. Invest your time in developing your relationship, into being truly present with your child, to understanding your child and assuring that they feel seen, soothed, safe and secure.

2. Keep the lines of communication open. As part of the relationship, discuss “hard topics.” Your child needs to know that no matter how much they screw up (or think they screw up), your love is more powerful than anything they could do. You will be there for them.

3. Know your child/teen. Embrace who they are, whether they are gay, straight, trans, autistic, nonspeaking— whatever they define as their true selves. Focus on their interests, their strengths.

4. If you see signs of depression, withdrawal, behavior changes, talk with your child, expressing what you see, why it concerns you. Ask how you can be of help to your child.

5. If you think your child is considering suicide, ask them. “Are you thinking about killing yourself?” “Do you have a plan? What is your plan?”

These cannot be taboo conversations. The ability to calmly ask these questions without expressing fear, judgment, or other intense negative emotions provides the opportunity to understand what your child is feeling – and where you can go (together) from there.

Resources

See the American Foundation for Suicide Prevention (AFSP) for more guidance.

Additional resources can be found at NAMI (National Alliance on Mental Illness), the Suicide Prevention Lifeline, and the Suicide Prevention Resource Center.

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6 Responses

  1. After Talking myself down today and standing up for myself against abuse I want to thank you for sharing your truth tonight. Your numbered bits brought up alot if memories for me especially unpleasant ones which your piece gave me the courage to tackle.

    I like this part
    1. Love your child with all your heart and soul – unconditionally. Do not be swayed by advice that doesn’t feel right to you. Invest your time in developing your relationship, into being truly present with your child, to understanding your child and assuring that they feel seen, soothed, safe and secure.

    For me
    Being Present saves lives. I wish I’d have this. Being present is something we need to survive. In the modern day absent parents like my own can now abandon and block all contact with their children. I realized that one of the reasons I struggle with thoughts of suicide is BECAUSE no aprents are present for me when I need them. If not my biological ones I can’t expect parents who havw their own children to be present. Presence means there at MOST times we need them. I really need mom and dad but survival is nigh impossible for me. Im still here inly because of NC and my support group but this ones CRUCIAL.

    2. Keep the lines of communication open. As part of the relationship, discuss “hard topics.” Your child needs to know that no matter how much they screw up (or think they screw up), your love is more powerful than anything they could do. You will be there for them.

    This one #2 touched me and exemplifies your incredible writing. Because im not driving, because of difficulties I have doing things. I feel broken. No one wants to talk about the hard topics of saying “yes you have a Dissability, its not your fault, you are bot broken” some parents begin to treat their child with disdain, like mine, the childs ultimate percieved screw up becomes dating to talk about their Dissability, what parents make taboo like out dissabilities and sexual/gender identity we begin to hate about ourselves.

    By acknowledging #2 you have done something other parents won’t and for that I can’t help but love you.

    I could imagibe how much more I could love myself if my parents knew what you did.

    Yuh ou have learned all of this through such pain and loss. I wish I could hug you. The world will learn from you and your writing will save lives.

    3. Know your child/teen. Embrace who they are, whether they are gay, straight, trans, autistic, nonspeaking— whatever they define as their true selves. Focus on their interests, their strengths.

    Many Autistics are nonbinary like me or bisexual also like me. Or they are Straight, Gay, Lesbo etc, and we want to be loved as both our identity as individuals including as Autistics ARE not a form of mental Illness. AT ALL. They are just who we are.

    If my mother didn’t tell me my father would kill me if he found out I was Bi and my grandmother didn’t sgame me for both my Dissability and being bisexual I probably wouldn’t hate them, but accepting their homophobia and biphobia wouldn’t fix all of their other abuse. I could have avoided past attempts at suicide and many thoughts if I had your words back then. You give people like me closure. I think your son would be proud of how far you have come. Now you save others. He is your guardian angel.

    4. If you see signs of depression, withdrawal, behavior changes, talk with your child, expressing what you see, why it concerns you. Ask how you can be of help to your child.

    I know for parents this is easuer said then done. To parents reading your work see this. I plead. PLEASE hold your children. No matter what you, your partner or society says. So many times my depression was broken or could have been if I could just have that parental warmth of curling up beside mom or dad.

    5. If you think your child is considering suicide, ask them. “Are you thinking about killing yourself?” “Do you have a plan? What is your plan?”

    We often have a plan. Many of us think of blowing our brains out, Slitting our Wrists, or self hanging. These are what I call the BIG 3

    What we think is the easiest. Before I continue. I Say to you, this is NOT your fault. MANY factors culminate in what becomes a suicide. You are loved.

    Bullying
    Lack of Acceptance
    “Coming out” then tecievung silence or distance
    Sometimes its not what a parent says. Its WHAT they don’t.

    My siblings didn’t understand because they don’t know. My mother made it clear in her silence and her words that she hated me, when I spoke to her about liking both girls and then guys she told me , when she had me alome that I was going to hell. I never spoke about it again and got engulfed by shame ready to end my life.

    For parents of children born 1994-2020 , Parents PLEASE. Don’t claim to accept your child/adults sexuality. Fully accept, acknowledge and include both your childs orientation and identity. If you stay silent its like our existence is being kept a secret.

    To finish, you said

    “These cannot be taboo conversations. The ability to calmly ask these questions without expressing fear, judgment, or other intense negative emotions provides the opportunity to understand what your child is feeling – and where you can go (together) from there.”

    This last paragraph was THE best end to one of the best articles I have read. From nb your pain you are forging a path to life, so others will not feel that ending theur lives is the only way. As I read this my eyes teared up. I want you to kniw that this is NOT your fault and that in this article you have aided in the destigmatization of pain.

    As someone from many old school cultures I will say. Suicide isn’t always caused by mental illness as often mentalky and physicallythe person is not “sick”, sometimes society is ill and its caused by SOCIETAL and CULTURAL apathy against a healthy human being.

    Our understanding of what illness is, what Affects Autistics and Allistic emotions must change. Your article is a powerful start.

    1. I am so grateful to you for what you have written. You have touched me deeply. Thank you for your kind comments. I’m sorry for the pain you have experienced. I’m so glad you are still here. I pray that your life will be brighter and filled with hope! Much love to you! ♥️

  2. After Talking myself down today and standing up for myself against abuse I want to thank you for sharing your truth tonight. Your numbered bits brought up alot if memories for me especially unpleasant ones which your piece gave me the courage to tackle.

    I like this part of your writing. It helped me alot as are my thoughts on it.

    1. Love your child with all your heart and soul – unconditionally. Do not be swayed by advice that doesn’t feel right to you. Invest your time in developing your relationship, into being truly present with your child, to understanding your child and assuring that they feel seen, soothed, safe and secure.

    For me
    Being Present saves lives. I wish I’d had this. Being present is something we need to survive. In the modern day absent parents like my own can now abandon and block all contact with their children. I realized that one of the reasons I struggle with thoughts of suicide is BECAUSE no parents are present for me when I need them. If not my biological ones I can’t expect parents who have their own children to be present. Presence means there at MOST times we need them. I really need mom and dad but survival is nigh impossible for me. Im still here only because of NC and my support group but this ones CRUCIAL.

    2. Keep the lines of communication open. As part of the relationship, discuss “hard topics.” Your child needs to know that no matter how much they screw up (or think they screw up), your love is more powerful than anything they could do. You will be there for them.

    This one #2 touched me and exemplifies your incredible writing.

    Because im not driving, because of difficulties I have doing things. I feel broken. No one wants to talk about the hard topics of saying “yes you have a Dissability, its not your fault, you are not broken” some parents begin to treat their child with disdain, like mine, the childs ultimate percieved screw up becomes daring to talk about their Dissability, what parents make taboo like out dissabilities and sexual/gender identity we begin to hate about ourselves.

    By acknowledging #2 you have done something other parents won’t and for that I can’t help but love you.

    I could imagine how much more I could love myself if my parents knew what you did.

    You have learned all of this through such pain and loss. I wish I could hug you. The world will learn from you and your writing will save lives.

    3. Know your child/teen. Embrace who they are, whether they are gay, straight, trans, autistic, nonspeaking— whatever they define as their true selves. Focus on their interests, their strengths.

    Many Autistics are nonbinary like me or bisexual also like me. Or they are Straight, Gay, Lesbo etc, and we want to be loved as both our identity as individuals including as Autistics ARE not a form of mental Illness. AT ALL. They are just who we are.

    If my mother didn’t tell me my father would kill me if he found out I was Bi and my grandmother didn’t shame me for both my Dissability and being bisexual I probably wouldn’t hate them, but accepting their homophobia and biphobia wouldn’t fix all of their other abuse.

    I could have avoided past attempts at suicide and many thoughts if I had your words back then. You give people like me closure. I think your son would be proud of how far you have come. Now you save others. He is your guardian angel.

    4. If you see signs of depression, withdrawal, behavior changes, talk with your child, expressing what you see, why it concerns you. Ask how you can be of help to your child.

    I know for parents this is easier said then done. To parents reading your work who see this. I plead. PLEASE hold your children. No matter what you, your partner, or society says. So many times my depression was broken or could have been if I could just have that parental warmth of curling up beside mom or dad.

    5. If you think your child is considering suicide, ask them. “Are you thinking about killing yourself?” “Do you have a plan? What is your plan?”

    We often have a plan. Many of us think of blowing our brains out, Slitting our Wrists, or self hanging. These are what I call the BIG 3

    What we think is the easiest. Before I continue. I Say to you, this is NOT your fault. MANY factors culminate in what becomes a suicide. You are loved.

    Bullying
    Lack of Acceptance
    “Coming out” then recieving silence or distance
    Sometimes its not what a parent says. Its WHAT they don’t.

    My siblings didn’t understand because they don’t know. My mother made it clear in her silence and her words that she hated me, when I spoke to her about liking both girls and then guys she told me , when she had me alone that I was going to hell. I never spoke about it again and got engulfed by shame ready to end my life.

    For parents of children born 1994-2020 , Parents PLEASE. Don’t claim to accept your child/adults sexuality. Fully accept, acknowledge and include both your childs orientation and identity. If you stay silent its like our existence is being kept a secret. Thats what it means to fully accept.

    To finish, you said

    “These cannot be taboo conversations. The ability to calmly ask these questions without expressing fear, judgment, or other intense negative emotions provides the opportunity to understand what your child is feeling – and where you can go (together) from there.”

    This last paragraph was THE best end to one of the best articles I have read. From your pain you are forging a path to life, so others will not feel that ending their lives is the only way. As I read this my eyes teared up. I want you to know that this is NOT your fault and that in this article you have aided in the destigmatization of pain.

    As someone from parents of many old school cultures, I will say. Suicide isn’t always caused by mental illness as often mentally and physically the person is not “sick”, sometimes society is ill and its caused by SOCIETAL and CULTURAL apathy against a healthy human being.

    Our understanding of what illness is, what Affects Autistics and Allistic emotions must change. Your article is a powerful start

  3. I put a big caution to you. Everyone seems to be saying, express concern + ask your kids psychologically challenfing questions. Kid may feel unsafe + pressured when you do that.

    Remember that just promising to start loving unconditionally does not make it instantly become safe for your kid to believe you. If you accompany the promise with a demand pressure on the kid to suddenly start being perfectly psychologucally open to you, then you are actually not loving unconditionally ! + are caught in a lie. Doh’t expect the kid to do that, without more experientially learned safety than a promise can ever give them.

    When my life labelled as gifted in an authoritarian school full of reckless predictions, reached breaking point of a pressure abuse trap, instead of suiicidal I was terrified of being driven to suicide. You see how those are different things? In the year-+-half before the final crash, when my school life was increasingly foundering into the pressure trap, while my mother was still in completely btainwashed faith in the gifted propaganda, when nagging me about school she grew a habit of asking me to understand her being “concerned for your welfare” Because I was unsafe to confide school troubkes in her, because she faithfully trusted the teachers I was in fear of + any confiding could reach them, + be ause her approval was clearly conditional on keeping up the gifted fantasy + she perceived setbacks i it as my fault, the talk of “concern for your welfare” was only a still extra dangerous pressure on me, another unwanted distressing worry, so actively harmed my welfare. Actively pushed me further to the breaking point.

    1. I so appreciate your comment! One of the things I have learned fairly recently is how much work I needed and will always continue to need to do on myself to understand my reactions (including thoughts), to learn to pause before responding, to consider whether my thoughts and actions match my values, to embrace unconditional love, to catch myself if/when my thoughts wonder to familiar paths that I no longer choose. All my best to you!

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