Far from the Tree: Parents, Children, and the Search for Identity

by Andrew Solomon

Tending to them can be gravely frustrating because the distinction between deficits of emotion and deficits of expression is often opaque.

The problem is that emotion is not gratis. To love a child who does not evidently mirror your love exacts a more terrible price than other love.

Thought: A parent will always love their child no matter what. It's inevitable but a child does not always have to love their parent.

‘Just love the child.’

“I went cold. Something was terribly wrong,”

“I’ll never forget the stricken look of the librarian when I plopped down those books on the desk,”

When Cece was four, they visited a local neurologist, who said, “If she’s not talking at all after this high-quality early intervention, she’ll never talk, and you should get used to that. She has serious autism.”

The first time Cece was administered anesthesia was for dental work, in early childhood. Betsy wondered whether it would be easier if she died from the anesthesia.

“I wish hell were other people, instead of me,”

“On January first, 2000, she left our house forever.” She was seven.

“I was talking to my sister and I said, ‘Cece doesn’t cry when I leave,’”

Parents of children such as Cece fear that their love is useless to their children, and they fear that their deficits of love are devastating to their children, and it’s hard for them to say which fear is worse.

‘Because you’re afraid if you don’t go one day, you’ll never go.’”

If I think about her sensory issues, all I have to do is pull them back a little, and they’re mine.

if we’d done all that, our kids might be normal.

“Cece and Emmett are never going to think romance, but they might think closeness and pleasure,”

“On good days I perceive God’s light about her, and on bad days I beg for God’s understanding. That’s the thing about autism: it just is.

Imaginationism—the idea that mothers with perverse desires produced deformed or troubled children—had been long abandoned in relation to dwarfs and others with physical deformities, but it persisted for those with psychiatric diagnoses and fit quite naturally into Freud’s account of formative early experience.

unaffectionate parents made their children autistic led to the concept of the “refrigerator mother”—though

“The precipitating factor in infantile autism is the parent’s wish that his child should not exist.”

Children with Asperger syndrome are highly verbal early in their childhood, though they often use language in idiosyncratic ways. They generally have normal cognitive development and are interested in, though somewhat incompetent at, human interaction;

At the same time, the most impaired end of the spectrum is so different from the least impaired that it is sometimes hard to accept the persistent metaphor of the spectrum structure.

I had assumed that his failure to comply with social norms was an affectation; only later did I understand that our friendship had been undermined by a neurological condition that was not subject to being fixed.

Whenever a child does something desirable, he is rewarded; when a child is doing something undesirable (“stereotypies,” such as head-banging, arm-flapping, rocking, or producing high-pitched noises), he is interrupted and steered toward desired behaviors.

For each positive act, the child receives a sticker on a token board, and when a certain number of stickers accumulate, the child gets to choose a treat.

The incompetencies associated with autism sometimes cluster into a terrifying level of pain—pain for the person with autism, and pain for those who attempt to care for that person.

Irish mythology holds that a child may be whisked away at birth, and a fairy changeling left in its place. The changeling will look just like the child, but will have no heart; it will want to be left alone, will hold on to a piece of wood that recalls its fairy home, and instead of speaking, it will croak and hum. If the mother tries to caress or love it, it will laugh and spit and take revenge with bizarre acts. The only solution is to throw it on a bonfire.

“Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.”

“Being seen in light of the ghost of who you were expected to be is a kind of emotional violence for many disabled people.”

parents choose treatments on the basis of guesswork about what their children must

want. Parents may work hard to help their children emerge from autism and fail to do so; they may, equally, help their children lose traits of autism, then find out that their children hated being “treated” and were happier the way they were.

I found something bracing in Nancy’s brash assertions of misery and disgust, her ability to say that if she’d known what kind of children she was going to have, she wouldn’t have had children.

Fiona has classic autistic traits, is completely disengaged from other human

beings, and showed no signs of developing speech on her own.

She hates to be touched and wouldn’t keep ...

When I got child-care help, I would lock myself in my room. I just wanted to sit at the bottom of the dark closet, no sound, no light, nobody.”

however, she had no experience of normal

children.

With coaching, Fiona eventually developed language, but her syntax and affect are odd.

If a four-year-old calls him a bad word, he might knock him across the room.

Fiona was mainstreamed with an aide from first through eighth grade.

Luke’s deficits of intelligence and his disruptive behavior disqualified ...

‘Yeah, but not with the kids.’ Had we known what we know now, we wouldn’t have done it. Do I love my kids? Yes. Will I do everything for them? Yes. I have them and I do this and I love them. I wouldn’t do it again. I think anybody who tells you they would is lying.”

The relationship between language and intellectual

disability is confusing; no one really knows what may be hidden behind speechlessness.

“He tested in the normal intelligence range. But he’s very low-functioning. If he can’t dress himself and he is a genius, what does that mean? That means he can’t dress himself.”

All the things that a person does in an adult life give it texture.

“If I could tell people one thing about autism, it would be that I don’t want to be this way but I am. So don’t be mad. Be understanding.”

“It is hard to be autistic because no one understands me. People assume I am dumb because I can’t talk or I act differently. I think people get scared with things that look or seem different than them.”

“I think behavior therapy helped me. I believe that it allows me to sort my thoughts. Unfortunately it can’t make me normal. Believing helped. Then a miracle happened, you saw me type. Then you helped me forget that I’m autistic.”

Alexandra appeared to develop normally, David was, at fourteen months, given to running up and down the hallway and giggling in what struck his mother as a peculiar way.