To avoid further incidents of misery and tragedy, parents of autistic children must learn to understand and respond to the neurological conditions of their children with sensitivity
Dear ‘I Am Adam Lanza’s Mother’,
Thank you for opening the dialogue on mental illness – not enough people want to talk about this. You’re right, this is a conversation that needs to be had, and I had to respond to your letter.
You said in your letter that your 13-year-old son is a genius, with IQ scores off the charts. I am an adult of 25 now, but as a child I was also exceptionally gifted, and as a teenager I was also what the adults in my life would have described as “troubled”. I self-harmed throughout my teens. I had few friends. I scared the s**t out of my parents. I shouted at them. I told them I hated them. On many occasions I expressed a desire to kill myself, and I really wanted to, I was so angry and unhappy. I was medicated on Zyprexa, the same brand of medication you said your son was prescribed, as well as numerous other types of anti-psychotics for a number of years, all for their mood-stabilising effects, just like your son was. I was misdiagnosed as mentally ill, and like your 13-year-old son, I was hospitalised. All of these things did me more harm than good. I am still trying to get over the trauma of my “treatment”.
When I read your account of your son’s behaviour, I feel like my heart is falling out, for you and for him. I feel for you because, like my parents, I can see that you’re baffled by his outbursts, afraid of his rage, and feel backed into a corner by communications that you can’t help but see as manipulative threats – to harm himself, or to harm you or your family.
I am now a successful writer, in a loving relationship with the only person I’ve ever known to fully understand and believe in me, and correctly diagnosed with autistic spectrum disorder, which is not a mental illness. It is a neurological condition, a fundamental way your mind works. None of the other conditions which you mentioned in your letter as possible diagnoses for your son are mental illnesses either. Please realise that your son’s behaviour is not a symptom; it is a reaction to the way he is experiencing the world.
I would do anything to prevent and heal the kind of resentment, anger and profound loneliness that I was doomed to feel throughout my young life, because of the failure of those who should have tried harder to understand me when I was too young to fully understand myself. There is no greater danger than exercising power without understanding, and when you try to raise a child who is different in a way you don’t understand, that’s what you do to them. So please listen to me while I try and speak for all the ‘Almost Adam Lanzas’ out there. All the autistic kids, the different kids, the “loners”, who are never going to be murderers, but will all suffer from a lack of understanding.
I’m sure as his mother you can’t have missed his suffering. But maybe you don’t understand some of the reasons why he is suffering, and why so much.
So your kid is a genius. I am too. Sensory hypersensitivity? Me too. And just an educated guess – a powerful need to control his routine, his environment and the things around him? Me too. It’s the only way we can feel comfortable enough to function, instead of experiencing extreme and distracting mental anguish at any slight skewed-ness that you can’t even see.
I promise you, please listen. Your son was not being melodramatic or manipulative when you took off to the mental hospital and he said you were “taking him to hell”. Quite simply, for the very very smart, and the very very sensory hypersensitive, like your son and myself, mental hospitals are institutions of torture and panic.
I’m sure your own research into the diagnoses that have been suggested for your son have explained social anxiety in autism. If ordinary people in daily life seem frighteningly unpredictable to us, because we can’t intuitively understand the unspoken rules by which they operate, imagine how much more terrifying the other patients in a mental hospital are. It feels less like a phobia and more like an allergy – a painful physical response to the presence of unpredictable behaviour. Now take that allergy and spend a night in a room with no means of escape, listening to the other patients screaming, crying, drifting around like zombies, touching things, talking, all without any apparent logic or pattern.
You are not allowed to be alone in your room in the daytime; you must be with all these other people. And every half an hour at night, another stranger comes into your room to check up on you. For us, this isn’t comforting, this is intrusive. This makes us feel like an animal in a cage, being watched, being studied, being desperate but unable to escape.
No person with the sensitivities you mention your son has in your letter would ever want to go back. If you had them, wouldn’t you “throw a fit”, as you say he did in your letter? Biting and scratching seems crazy, but it sounds like he was terrified, like a trapped animal wanting to get away. I feel exactly the same about those places.
You said your son has a brilliant mind, and it sounds as if beautiful ideas are an inestimable and sole joy in his life, from the way you say he talks about his intellectual interests and his ability to grasp complex ideas. It has been mine. So, please understand, how much worse the medication is, where all control over your own mind is taken from you. It is a truly horrifying thing to do to the flighted, gifted mind. It is like smashing a bird’s wings because it keeps flying into power lines. Ask him if he’d rather be strapped to a desk with unlimited access to books, or taking that medication, and I think you could be surprised at the answer.
It’s okay – it’s not your fault. You didn’t know this. I don’t know your son. I don’t know if he has a psychotic illness that would warrant this medication. And I know you are desperate to find something that lets you to get along without being scared. But I firmly believe this medication is not appropriate for behavioural problems – because while it may control the behaviours that are causing other people’s difficulties, it utterly destroys a person’s interior life. And it is torturous. It is a horrible half-alive life.
I know you are well-meaning and feel desperate, like so many parents with different children – like my parents were. You are following medical advice. You are doing your best with the received wisdom that you have about how to control a child. But at the moment, he is smart enough to feel manipulated. And when he is grown up, he is the one that will feel abused.
You mention your son loves Harry Potter. You said it in the same beautiful way that any loving parent would see it – as a normal childish thing, a childhood book that reminds you he’s a kid, despite the aspects of him that frighten you. But my belief is that this isn’t the reason why he loves Harry Potter. He, like all of us ‘different’ kids, loves Harry Potter because Harry Potter is a different kind of person, with abilities and problems that nobody in the ordinary, ‘muggle’ world even knows to exist, let alone knows just how big and earth-destroying they are. In that ordinary ‘muggle’ world, Harry is out of place, misunderstood, and even abused for his difference, and nobody knows the real him.
Unlike most autistic or neurologically diverse people with problems communicating their emotions, I’ve stumbled on the ability to express some of this. So on behalf of all of us, here are two suggestions.
Firstly, remember that your son has an interior life. Maybe he’s not ill or out of his head. He may be 13, but he’s thinking and intelligent. He is not enjoying his life at the moment, and not being able to apply that intelligence to fixing some of the problems he has with processing his life and some of the problems in your relationship. I’d like to suggest avoiding talking face to face, because if he is autistic, that’s freaky and intense, but try talking over the internet by typing, using an instant messenger like Skype. It might be easier for him to tell you what he needs, if he can trust you to use the information to make his life easier, not control him. And the more control he has over his own life, the less frustrated he will be, and the easier your life will be with him.
Secondly, please be on his side. At the moment, he is very alone. It must seem like a great injustice to someone that smart (it did to me at his age) to have to be controlled and micromanaged on things that, logic insists to us, don’t matter at all.
Let’s be honest, compared to the Newtonian Physics you mentioned your son is studying, the billions of stars in the universe, and the length and complexity of the mental road that ends up in a person slaughtering 27 other people and then himself, doesn’t insisting on following the school dress code seem laughably trivial? If you were a child genius, who clearly knows exactly how smart you are, wouldn’t you find that degrading and extremely frustrating? Isn’t that a choice that a child genius has a right to make?
Taking away your son’s electronics and video games is like removing a German Shepherd’s daily walk – it’s not a toy to your son, it’s a necessity! He has a brilliant, brilliant mind, and he cannot bear the boredom of inactivity.
As for me, and as for Adam Lanza, a lot of us are very smart, a lot of us are loners, and a lot of us are misunderstood. Ultimately, everyone has to take what they have, and make a choice: to be constructive or to be destructive. Whatever the reason, and whatever his problem, Adam Lanza chose to be destructive. I chose constructive, and while the well-meaning injustices of neuro-typicals, as people with normal minds are sometimes called, still strike and injure my over-tender brain daily, I’m trying to receive your strikes softly and reflect it back, so you can know better what you do to us, and know what we go through when you put us in hospital and drug us and take away our games and escapes and comforts, and keep us overwhelmed with people and never alone for a minute.
You say you are Adam Lanza’s mother, Dylan Klebold’s mother, Eric Harris’s mother.
I am your son and daughter – fiercely intelligent, fragile, frightened. Dreaming of a world where no autistic or otherwise neurologically different person will be forced to do things that cause them discomfort and pain, or take terrifying, mind-paralysing, anti-psychotic drugs ever again.
I am your son as he could be in 12 years: gentle, loving, giving, forgiving, fiercely intelligent, and righteously and legitimately angry at the beautiful-mind brutalising treatment I was forced to receive because of poor understanding, bad communication between neuro-typicals and the neuro-diverse, and the heavy-handed, escalatory treatment of one by the other.
Or in seven years, your son could be Adam Lanza; nobody ever listened to what really made him angry. And now we’ll never know.
We do need to talk about mental illness, you’re right. But after reading your letter, and hearing your son’s voice coming through your lines, I don’t think he’s mentally ill. I think he’s mentally different, and he’s immensely frustrated.
As for Adam Lanza, the mass murderer who is at least encouraging people to talk about this – we’re never going to know what brought him to that terrible mental place of violence and slaughter. Maybe he was simply mentally ill. Maybe he was rejected, desperately unhappy, and saw it as payback.
But I think we need to stop assuming mental illness as a blanket motive for acts of violence and expressions of pain that we can’t understand. It is too easy to use it lazily, as a way of avoiding a real, labour-intensive attempt to truly understand legitimate sources of frustration, alienation and anger, in our ‘different’ young people. Please, everyone, for the sake of the whole world and everyone in it, stop talking about mental illness and start asking about it. Are we so unhappy because we have an illness or because we have a real reason to be?
As you said, God help us both. At the very least until He does, please afford your unusual, gifted, difficult son the dignity of not likening him to a mass murderer. You both still have choices to make.
‘I Could Have Been Adam Lanza, If I Were To Believe You About Us’
Image from: http://bit.ly/UNKItO
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