John O'Neil offers comments about the issues raised by the lyrics he wrote for the Songs of the Spectrum. If you have comments or questions about these issues, you can ask staff members of top autism schools in the New York area at the SingSOS blog.
One Went Missing
Hide and Seek
Afraid (My Brother's Cries)
If It Were His Legs
House on Fire
Day After Day (Dr. Maturin's Daughter)
When You Grow Up
He's Coming Back
How do you help a child with autism? One minute at a time…minutes that become hours, days, weeks and months.
We don't know much about autism, but we do know that effective treatment is intensive treatment. This fits with what we know about the neurology of development in general. The out-of-the-box wiring (anatomy at birth) shapes what a child experiences, but a child's experience (the neural connections that are made and reinforced) shapes the wiring as the brain grows. So every minute the attention of a child with autism can be engaged with his or her environment contributes toward the development of the skills they need to stay engaged.
Parents also keep a constant hand or eye on their children for simple reasons of safety. Children on the spectrum are unpredictable and do not always respond to signs of danger; a momentary lapse can literally land a child in deep water. And part of the reason is simply that when you can help a child who needs help, it comes to seem impossible not to, however impossible it may seem to do all that's needed.
Many children with autism appear to be developing typically until the ages of 2 or 3, when unusual behaviors emerge and skills can appear to deteriorate. The change can seem to feed on itself, accelerating the rate at which the child can seem to retreat into him or herself. I've heard parents describe this process in similar terms – it's like he was swept out to sea; she's locked inside herself; he's disappearing. I believe the old fables about changelings were based on this phenomenon.
A diagnosis of autism can be a heavy blow to a parent, but is also a necessary first step. If your child's behavior worries you, it's better to know what's going on as soon as possible. All developmental disabilities, not just autism, are easier to treat the earlier help begins, but in autism the need is especially great. Studies have shown sharp differences in outcome for children treated before age 4 and those treated later. Pediatricians can reliably diagnosis autism spectrum disorders as young as 18 months. Make sure your doctor pays as much attention to your child's cognitive development as physical development. "He'll grow out of it" is no substitute for a developmental screening. Review a checklist before a visit be prepared to discuss your concerns.
Where do these children go when they turn away from the world? What's going on in their heads when we can't get through to them? One of the key phrases in the clinical description of autism is "a propensity for self-stimulatory behavior."
These are behaviors whose result reinforces an urge to repeat them. In extreme cases, this can involve self-injury – biting, scratching or head-banging. Often it's behavior that produces a strong physical sensation, like spinning, or constant perceptual feedback, like hand-flapping or finger-picking.
It can also involve more subtle, passive behavior – staring at a fan, or seeking out reflections. With our son, it wasn't until a teacher pointed it out that we realized how much of his attention was absorbed by "stimming" off shiny surfaces, even those that caught the faintest of reflections, like a banister or the screen of a TV that had been turned off.
Such behaviors can serve as a coping mechanism, drowning out or reducing sensory input that is being experienced as overwhelming. But it can also drown out the inputs needed for healthy cognitive development, in particular, the typical child's focus on the face and eyes.
Within minutes of birth, most children can distinguish faces from other kinds of objects, and show a preference for faces and for eyes in particular. That preference is self-reinforcing; the more children look at eyes and faces, the more powerful they become as avenues for communication and connection. In time, the normally developing brain begins to recognize faces as a unit, rather than as a collection of parts, using a neural pathway that's faster and apparently more powerful than most.
People with autism generally never develop that ability. They continue to use the same "piece by piece" recognition mechanism for faces that they do for other objects, and are far less likely to look at someone's eyes as a source of non-verbal cues to meaning.
So the Shiny House is where they go, and they may be just too busy in there to attend to the factors that drive social development. Motivation is the key to learning, and for children on the spectrum that argues for a steady effort not only to engage them, but to make the world, and the people around them, more rewarding than a spinning fan or the gleam on a polished floor.
Autism is hard to define and hard to describe. Perhaps instead of the diagnostic criteria, it means more to talk about a boy: when he was 2, he could play hide and seek; when he was 3, he couldn't.
We can help children grow, one by one. But can we make the world grow up? Of all the things we'd like to provide children and adults on the spectrum, the one that should be the easiest is often the hardest to come by: acceptance. To a large extent, that depends not on us, but on the woman behind us in line at the zoo, or on the man at the next table in a restaurant or anyone making those signals we humans give off to indicate who is part of "us" – and who is not.
Acceptance – not of limitations but of difference – can be the first step to understanding, and understanding promotes acceptance. From some people this flows naturally, without hesitation. From others, well, not so much.
Fear, of course, plays a role in that – the fear of the not-like-me.
Acceptance and understanding can be issues for parents of ASD children as well. Every one of us wants – oh, what an understatement – our child to develop as many cognitive skills as possible, to emerge as an independent adult. With a developmental disability in which it is constantly unclear where a child will "end up," it is easy to focus on a child's weaknesses, on what he or she can't do. It can take an effort to step back and look at their strengths, however different those may be, and to remember that whatever they can or can't do, they are who they are.
Brotherly love is a complicated emotion, as any parent with more than one son can tell you, and doesn't always look like love at all. But an entirely different set of complications emerge when the normal sources of friction are not present – when one brother is not competing for toys, to be first, for Mom's attention. What takes its place for the non-ASD sibling can include confusion, anger, concern, jealousy, fear and, eventually, respect.
It can be hard on a parent to see their "typically developing" child learning very early that not everything in life goes the way you want it to. But as time goes by, it's easy to see that the other side of the coin is a maturity and tolerance beyond their years, and that the lessons they have learned are the most important ones. And sooner or later, brothers being brothers, they will find their own way of driving each other crazy in the way brothers always do.
A great source of frustration for parents of children on the spectrum is the fact because the condition can't be seen, to many people it's not truly real. There's no crutch or wheelchair to place an ASD child in the unspoken categories of people whose problems we understand and can empathize with. And the one fear that people don't seem to have about autism – that they could catch it – is the one that would do the most to make it seem like a problem for "us" and not for "them."
Disorders with behavioral symptoms are easy to misread. Despite the rising awareness about autism, there are people who will say that for kids on the autism spectrum the problem is not one of neurology, but of parental discipline. For parents exerting every ounce of their will and patience to keep their families on a positive track, such misconceptions can be especially frustrating.
The treatment, too, seems so intangible compared to the treatments for more purely "medical" conditions. Society's highest respect, it seems, goes to things that can be addressed with drugs or surgery. The patient planting of seeds through countless hours of teaching and reward seems too little or too much – but not "real," in either case.
There are lots of statistics tossed around in the world of autism that are not based on much of anything, and in this category I'd include the often-repeated "fact" that 80 percent of couples with an ASD child divorce. I have no idea if that's true – it doesn't match the people I know – but I'd bet plenty of them think about it. It's certainly an exceptionally stressful situation. Unfortunately, given the shocking lack of available treatment, much of the strain comes from questions like how to pay for what the child needs, whether to sue a school district or at what point to stop fighting the system. But the struggle also forces couples to face the fact that whatever their preconceptions of parenting and family life, what they have is something different – whether it's seen as better or worse. For all parents, understanding and accepting a child as an individual is a long process that often does not play out until the child grows up, if then. Autism and its challenges speed up that process, and sometimes one partner – all too often the dad – can't keep up.
I've often thought that one reason so little attention is given to what can be done to help children on the spectrum is that the process is so boring: evaluate a child's strengths and weaknesses; break down the missing or minimal skills into tiny steps; encourage their development through repetition and reward; test the skills across settings and situations until they are mastered. Where's the movie in that?
In most home programs like the one we had, the teaching begins at a little table, often in a basement that's been converted into a one-student school. It goes on and on and on – a National Academy of Sciences report recommended a minimum intervention of 25 hours per week, and the best results have come in studies involving 30 to 40 hours per week. Even more daunting is the need to keep all that teaching in some way fun – reinforcing enough for the child to want to learn, because without motivation there is no progress.
From the outside, it may seem impossibly tedious. But it usually produces results and those results often seem miraculous. The most amazing phenomenon in the world is the unfolding of a child's mind. It's something that normally happens so fast that it goes by in a blur. But with ASD children it happens step by step, right before your eyes, as skill reinforces skill until the motor is running on its own and going places you'd never imagine you'd see it go.
This song is an adaptation of a scattered string of passages in "The Commodore" by Patrick O'Brian, one of his series of novels about the British Navy in the Napoleonic wars. The two protagonists, Capt. Jack Aubrey and Stephen Maturin, an Irish physician, have just returned to England after a lengthy journey that took them around the world.
During the voyage, Maturin's first child, a daughter, was born. He knows from letters that something was wrong, and he arrives home years later to find his wife has fled. His daughter, Bridget, sits by the fire building a house of cards, taking no interest in him – nor in anyone else.
The word autism is of course not used, since it was coined in 1944, but it's clearly what is meant, and Maturin recognizes it as a condition other than common developmental delay. In his despair he makes plans to bring her to a doctor in Barcelona said to be knowledgeable about such children. As he broods, his servant, Padeen, is heard murmuring in Gaelic in the hallway, apparently casting dice. Then a small voice pipes up, repeating his words. He has never heard his daughter Bridget's voice before.
Maturin is called away for a short journey and leaves the child in Padeen's care. When he returns the governess reports a wonderful transformation.
Of course, that is an idealized outcome. But the story bears a strong resemblance to another, also from Ireland. In the 1950s, a series of doctors recommended institutionalizing an autistic child but a nurse from the countryside gave the parents different advice. "Hold that baby to your breast," she told the mother, "and talk to it, 24 hours a day, whether you're cooking or cleaning or in the shower." They kept the child, did what the nurse did and the boy grew up to be an officer in the Irish Army.
All parents worry about their children. Many of the things that parents of ASD children are anxious about are the same things other parents are worried about – it's just that the stakes are higher.
Most of the efforts to create suitable housing and job opportunities for significantly disabled ASD adults are spearheaded by parents trying to fill a void. Their motivation is simple, and you hear it a lot, often in the exact same words: "I have to be able to die."
Who will care for ASD kids when they're not kids any more and their parents are gone? Caring for autistic children is expensive. Giving them the proper, intensive treatment they need can be very expensive. But helping ASD kids early will help produce autonomous ASD adults who can care for themselves and contribute to society. In the long run, the early investment will pay huge dividends, and the society at large will be the winner.
He's Coming Back
The flip side of deepened anxiety is heightened joy. After the night, the dawn. It's a pattern built deep into our consciousness and sense of story, and with these children, it can happen for real.
There's much, much we need to learn about autism. But there's so much we do know that we don't use.
Consider: according to a CDC study, as many as half of ASD children weren't diagnosed until well after the best opportunity for treatment – and it's worse for poor children. Only a minority – probably a small minority – of diagnosed children get even the minimum recommended treatment. Many schools – until a few years ago, most schools – use methodologies that appear to be ineffective, or use watered down versions of more effective approaches. Insurers routinely deny coverage for even well-established treatments (the seminal study on behavioral teaching was published in 1987); a growing number of states are mandating coverage, but most big companies are exempt from state requirements – and surveys show large numbers of denied claims even when they fall under the new laws. A consequence of our failure to adequately help most children diagnosed earlier than 10 years ago is a skyrocketing number of severely disabled ASD adults. Services for them are "less than meager," according to a federal report.
We can do better. Every toddler can be screened for cognitive delays as well as physical problems. The latest version of the federal special education law requires that all treatments be evidence based – that should be enforced. Building treatment capacity will be hard, but it can be done. The health reform bills before Congress at the time of this writing would spread the mandate to cover autism nationwide.
What we would get for the effort is not just a generation more likely to be able to live independently, support itself and be an active part of the community. We'd get a generation of teachers better able to handle all their students – how these kids teach their teachers is something to see. And we'd get a society that's less rigid, more understanding and more appreciative of differences. We'd get those intangible things we gain when we do the right thing for those who cannot do them for themselves.
by James O'Neil
Autism is quite a misunderstood disability, and there are many types on the spectrum. People with autism have a variety of talents, first off. What gets other people frustrated is that they don't understand that people with autism have social difficulties. And autism is not one disability as opposed to a disability like ADD. There are many different kinds of autism.
The experience of autism is similar to the strengths and weaknesses of Achilles. Achilles was a very strong warrior in physical and mental ability yet he did have social problems. He was very smart in his academics, and he was all invincible except for his heel. Just like I am and most people with HFA are, they are very physically strong and they are gifted in a certain area of academics. But they have weaknesses, too.
People everywhere should be more open to people who have social problems. It's cruel how they are quite discriminated against. They speak language but the context is a bit different. People who don't have autism should be more open minded and respectful of people who have autism.
I think SingSOS can help people understand autism from both points of view - from with autism and a person without autism. This is through music rather than other stuff. I've expressed myself through writing and art. My father has expressed his feelings about me through lyrics. I can define myself as a lot of different things.