Autism: Life Afterwards

Reflections on Having Gone On After Autism

By Bonnie Yates

I: Life Afterwards
II: Other Children
III: William
IV: Lemonade

I. Life Afterward

A long time ago, I was just starting out and having kids. I had 2 children within one year three hundred and fifty eight days and I was in awe of how unexpectedly wonderful it was to bear witness to the beginning of a new person.

I was thirty-four years old when my worst fears were confirmed. I remember leaving UCLA after hearing that my beloved, four-year-old blue-eyed boy had autism.

My boy! How could this happen to me when I was so in love with him?

And where had he gone anyway? The cute, cuddly wonderful baby had been replaced by someone unfamiliar who had strange interests, ritualistic behaviors, didn’t speak much and was frequently unhappy.

Ages 4-6 were the hell years where we started ABA therapy and I braced myself for the worst. What does it mean to have a child who will never grow up? As wonderful as babies are, one expects that they will naturally progress to the next stage.

During the hell years, my life seemed to have been turned on its head. This wasn’t life, at all. It was hell. I had been in love with the idea of children, would have been willing to do anything for them and now autism was mocking me. Whatever you thought you were wrong, it said. Your son the doctor is no more. All that lies ahead is work and more work (ABA therapy is lots of work for everyone) without any clear indication of where all this work, stress and expense will lead.

I work with families to help them get meaningful autism treatment because I have been given the gift of “life afterwards.” I know not all families can have a normal life in the future but because of the results of ABA therapy, many can and that is the hope. Life afterwards means you get to a point where you can think about something other than autism and you can get back to caring about things you said would never bother you if only he got better.

Life afterwards means that your child learns how to talk and to read and to learn and to have self-insight.

Life afterwards means that you forget to savor it when you lie down for a nap and you do not have to worry that your child is unsupervised.

Life afterwards means that you worry about the lives and the needs of your other children.

Life afterwards does not guarantee that your child, who is now a man, and going to go off to college, will adjust to dorm life, make friends, graduate and figure out how to earn a living- but it does mean he has a shot at it.

Life afterwards means he is leaving on Thursday and the house is filled with boxes and he is packing up his things.

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II. Other Children

In many of these families that I meet, as in mine, there are other children.

Apparently, I was making choices even though I did not realize I was doing so at the time.

She was my oldest child – his older sister. She was my first – it was, as if she came out of a fairytale: bright – understood everything and could communicate all her thoughts by the age of one; empathetic: she intuitively read the moods of others; imaginative; adaptable, fun.

I remember that she found me in bed soon after her brother’s diagnosis. I had my head under the covers. She was six years old. She threw herself on top of me and from the bottom of her soul cried out: “I want him to get better.”

I did not have my children early but apparently there was a lot I needed to learn about being an adult and taking care of other people’s feelings. Instead, I was very consumed with my own feelings about how I was supposed to live with her very sick brother who I loved but I also hated and often times didn’t offer up much to like. I needed to worry more about her!

She saw that I was suffering. She decided that it was her job to ease her parents’ pain. She became teacher’s favorite and the perfect child. She held me up. I was in a permanent black hole. She took it and took it and
took it and I let her because I could not find the strength in me to be something more.

I am ashamed to say it but sometimes she comforted me as if she was the parent. She seemed to understand how ill-equipped I was to deal with all of this.

It is not easy to have people become unrecognizable. Nick had slowly slipped away as autism remade his attention and caused his gaze to become distant when he looked into the camera at age one.

But now this?

She, who was my rock, began slipping away at 14, when, after years of being the good girl, she just felt hollow and depressed. It no longer worked to ignore her feelings and be the perfect child.

Thankfully, we caught her as she fell, but it was a long way back and for 4 long years I agonized over where she had gone.

Later, I understood that you cannot ask a child to defer her needs indefinitely or to worry too much about her parent’s happiness.

“How”, I ask, “Would I do it differently now?” Where would I find the strength to save her when it had taken every ounce of my fortitude to try to save him? It is clear, though, that in a family where a child has
autism, all the children need saving. Or at least need parents who are able to see them separately.

I am really, really fortunate. All my children appear to be resilient.

But it is pretty clear that autism confronts parents with life boat–like choices about who gets limited emotional and financial resources.

When my daughter was crashing and burning, my boys began falling apart. They were perfect at home and melted down at school. By then, I knew to say to them that “being part of a family means that when someone is sick you go to extraordinary effort. I hope it won’t be necessary, but someday, if it is necessary, we will do the same thing for you.”

When things were very tough for her, I gave her a silver Buddha on a chain to wear as a good luck amulet. I found the necklace in her jewelry box the other day and put it around my neck. Thank God, this day came where I could savor the fullness of her life and marvel at all she has been able to become.

One must remember to never forget that things can get better!

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III. William

I don’t have any specific advice about how to heal from autism. I don’t know if it was a rationalization or a good instinct to have decided that my children needed another sibling. My daughter and my son did not get along well, He embarrassed and annoyed her – she resented him. I felt that she would perhaps never enjoy the easy camaraderie of a normal sibling – since she was critical of him, he did not find her to be a safe person. At some point – two years in – I was tired of dealing with autism. It seemed as if it might turn out that trying to save Nick at the expense of others would not pan out.

William was seven years younger than him and ten years younger than her when he was born and yet he easily befriended each of them.

When you are pregnant and you already have an autistic child, it is wise to avoid contact with people who have more than one disabled child. It is a crap shoot and although out of sight is not out of mind, in sight is a good source of a middle of the night panic attack.

A bright, normally developing child in the aftermath of autism is something to kiss the ground for everyday. And certainly, the presence of such a child is tremendously healing for the entire extended family.

There are so many autistic children now, though, that one suspects this is only a temporary reprieve. One’s neurotypical children will someday be parents and we will be grandparents.

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IV. Lemonade

I was sure that it was all going to turn out very badly but life is surprising – it teaches a lot. After a while, I could see how others turned the bad into good, writing books, becoming a trained behaviorist, etc., (there are so many examples…). What does it mean that the child who was the most handicapped had the greatest impact upon the direction of the mother’s daily life? One wonders, what might I have become, instead, if not for autism? How could I have been touched by so many about something that really mattered?

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