Autism – Candid Observations

A couple of weeks ago I went to the school where my daughter works with children who are on the spectrum. She has been working with these children for several years, and, as a licensed music therapist, she is remarkably effective at helping children reach their inner selves through and using music.

The school puts on programs twice a year; one during the winter holidays and the other in spring. My daughter has the responsibility of working with children who are in her location and in the other school locations, writing and arranging the music that will be used, and coaching the children for their respective parts. Some sing, and some play an instrument, helped along by her. They sing or perform as soloists and as a group. For those playing an instrument (usually piano) they play the melody and my daughter sits beside them, playing the harmony.

The atmosphere at these programs is completely chaotic. While some children are performing, others are squirming in their seats, some are running around, and some experience meltdowns. All of this is normal, and teachers and parents alike do what they need to do even when it seems the chaos is growing in intensity.

But what never lets up is the performance of the children. When it is time for any one or ones to perform, they are ushered to the stage by parents adn staff. My daughter is there on stage with them, coaching them, encouraging them, helping them, hugging them, and getting children who can barely speak to mumble a syllable or two from a song she has prepared for them. Some stand on stage and hold their ears, some rock back and forth, but almost always, there is a word or a part of a piece of music that has made its way into their souls, and at exactly the right moment, they will “sing” that note or “say” that word (it’s often just a grunt). My daughter grins; the children see her grin and know they’ve done well.

In the aisles are the parents, taking videos of their children, some little, some now in their teens. To see their children on stage seems to give them life and when “the grunt” or the breakthrough comes in their performance, the parents smile and laugh and give each other high-fives. When their children come off stage, the parents are there, hugging them, saying, “good job,” and though the children hear the accolades most of them do not visibly react. But I can tell that inside, they are smiling and proud of themselves.

This school is expensive, and most of the students are white. I find myself at every performance I go to feeling proud of the work my daughter is doing with the children, and proud of them for what they are able to do – but I also get stuck in two areas. First, the parents. It seems to me that these parents probably seldom completely rest. Many of these children are low-functioning which means they are high-maintenance. I find myself wondering how often the parents are able to relax or get a restful night’s sleep. Their child’s (sometimes multiple children) needs are massive, and I wonder how they manage their own needs as well as the needs of their children.

The second place I get stuck, though, is wondering how many children – especially poor and non-white children – are likewise suffering from the effects of being on the spectrum. I wonder how they are treated at home and in school. I wonder how many of their parents know that something is wrong but cannot afford to get it treated, and how many parents don’t have any idea that something might be wrong, but simply label the child as “bad” and subject him/her to the effects of their frustration – screaming at them, putting them down, punishing them, hitting them … I wonder how many of these affected children end up being labeled with behavior problems in school and just get stuffed into a category that is almost like being in a locked cell. And then I wonder what happens to them once they are not children anymore and are thrust into a world that has little patience for anything that is considered to be out of the normal? I find myself wondering what kind of anger and frustration these kids hold inside themselves after years of being ignored and subjected to violent language and treatment from their parents and teachers– because it is clear to me that even though many cannot communicate what they are feeling, they are feeling something. They are on the spectrum but they are still human. I wonder if their meltdowns lessen with time or remain the same or even grow in intensity, making them prime targets for police officers who really do not know what to do.

The children at my daughter’s school are being attended to and helped. I have watched many of them grow up and some are still non-communicative or have limited capacity to communicate. But at least they know someone cares. They are helped, encouraged, and loved, and they know it. The parents of these children might be able to afford to put them in group homes when they become adults or do something that will help them live as normal a life as they can, but for the children who never get this kind of specialized help and care, I wonder where they end up.

When the winter program was over, the parents of the participating students surrounded my daughter. They were gushing with gratitude, telling her how good she is with them. And she is. I stood and watched and listened, and was proud of my daughter, but I walked out of the building sad, again, because this world makes little effort to help “the least of these.” We are too eager to label others and incarcerate them – physically or emotionally. And what I always end up carrying with me is the wish that somehow, schools or programs like these – with personnel like my daughter who is called to this kind of work – would increase and thus, save the children while they are young, and once they grow up.

A candid observation…

I was at a program a couple of weeks ago where children with autism and/or who were on the spectrum were performing in a holiday recital.

The atmosphere was a mixture of excitement and poorly controlled chaos. Some of the children were wide-eyed and expectant. Others had no life in their eyes at all. Some ran around the venue, parents chasing them, others sat stone-still or rocked back and forth making quiet noises.

On stage, some performed so well that one would not know they had a developmental issue. Others merely stood and made noises. My daughter, a music therapist, was the organizer of the recital, and she literally worked wonders with the children, both those who were high functioning and with those who were more challenged.

What I noticed, though, is that most of the children in this school and therefore in this recital were white; there were only three African American children. The sight stopped me cold, because surely, there are kids of all ethnicities who are born with autism and other developmental issues, but they were not represented this evening.

The observation took me to my belief that there are many children in poor, urban and rural areas, who have autism but whose parents either cannot afford the specialized care they need or are too young or too fraught with their own issues to recognize that there is something physically wrong with their children. Instead of getting care, they get yelled at, whipped, called names and are put down by their families. Then, they go to school and still, nobody recognizes that they have a developmental problem, and again, get chastised, criticized, put down, are ostracized, called names, labeled behavior problems …and they live lives of utter despair.

I imagine it must be like a person who has had a stroke and whose cognitive abilities are still intact but who cannot talk or communicate. He or she is at the liberty of people who do not understand and, unfortunately, often do not care.

These children enter the cradle to prison pipeline. They have a hard time in school; they must find themselves by themselves and many never do. Once they are pubescent, they are on the streets where they find some relief from feeling inadequate and stupid and bad. They find friends who like them and seem to respect them and they do what they can do to stay connected to what becomes their family.

That family, however, too often leads them deeper and deeper into the streets and the lure of excitement and danger offered by the streets. Too often, little kids with autism or other ailments grow up totally untreated; they are miserable children who grow up to be adults in despair. They push and fight and claw their way to try to find light and normalcy in this life but often fail.

They are killed, or they kill. They are arrested. They are convicted and put into prison, and they die.

As I watched these little children, my heart ached. There must be something we can do. There must be a way to form a foundation or something so that these children can get the same love, care and attention other, more privileged children receive. All children need that, no matter their color, ethnicity or class. If humans do not get care and love, they disintegrate, inside, spiritually and emotionally.

My guess is that there are more children than not being labeled bad who are really sick.

We who are able need to care about them and somehow, do something to help them.

A candid observation …