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Marti

Autism

How I Win (& Lose) for My Son With Autism

 

Since Nick was diagnosed with autism in 1999, various education caseworkers have been assigned to him. There was a gentle man with a white goatee who retired to Yorkshire. Then we had a disheveled, overworked woman who was genuinely kind-hearted but always on the brink of a heart attack. I think she may have quit. There have been many with brief careers at the Local Education Authority’s Special Educational Needs Department whose names I barely learned before they disappeared, along with whatever progress we’d made in negotiating an arrangement for my son’s education.

 

I’ve fought with them all, it seems, even the ones I liked. Their job was to grant Nick the minimum he needed to continue in school while my job was to make sure he had everything to which the law entitled him. I don’t know how many times I’ve sat in meetings and repeated these words: I will not make deals, nor negotiate away, my son’s rights.

 

Nick has an Education, Health and Care (EHC) plan. EHC plans identify educational, health and social needs for kids with disabilities and set support to meet those needs. Theoretically, the plan stays in place until the child reaches the age of 25. However, the latest LEA caseworker seems determined to remove Nick from her roster. Let me explain.

 

Nick was nineteen when he interviewed for a place on an introductory IT course at a local community college. He was accepted. Several months into the programme, a caseworker emailed me to say that Nick could not continue with the course. Apparently, because Nick had achieved 2 A-level grades at Level 3 (one in French and one in Greek) in secondary school he was overqualified to take the IT course at the local community college. The IT course was for Level 2 and Level 3 students. This level was at or below his previous level of education and therefore the education authority had decided he must leave it.

 

I wrote back, explaining that while Nick had indeed achieved two “C” level grades in French and in Greek in secondary school, he’d done so because he has an obsession with foreign languages. Obsessions are part of the collection of traits associated with autism.  Nick studies languages for hours every day using his phone or computer to access websites and verb tables. His obsession is so extreme, we have to interrupt his drills to get him to answer us.

 

As obsessions go, this is a good one. He speaks with a beautiful Parisian accent, talks like a Greek when in Athens, and charms everyone at our local Ethiopian restaurant with his attempts at Amharic. It also means he has a couple of A-levels. It does not mean he can do IT.

 

Nick’s languages are a splinter skill. They do not reflect a high level of academic achievement generally on his part. He was dragged through his GCSEs, achieving very few on first try. His GCSEs were so bad in fact, that when he applied to study languages at A-level, he was refused. The only reason he ended up studying for those A-levels in French and Greek was because I begged the secondary school—literally pleaded—until at last they begrudgingly allowed him to study French and a few other languages there. “We’ll try it,” they warned me. “But we won’t continue if we feel he can’t succeed.”

 

What a luxury to be able to drop a person because they won’t succeed. Parents of autistic kids can’t do that.

 

But back to my current argument over the IT course at the community college. The local education authority (LEA) would not support him in IT because he wasn’t able to begin at Level 4. Or even Level 3. Months into the computer course (one he loves), Nick was struggling to pass at Level 2. His teachers liked him; he got along in class; he went to college with pride every morning, and he tried his hardest. But the Local Authority was now refusing to fund him. Unless I could convince them otherwise, Nick would have to leave the college mid-term.

 

You might be asking yourself a few valid questions. First, why isn’t this kid with A-levels going to university and studying languages?

 

I have to admit, I had once greatly hoped he would apply for a university place. But it was a dream of mine, not his. Anyway, the requirement for language students may too high for him right now. He can’t write long essays. He can’t speak for lengthy periods, which is why he didn’t get higher grades at A-levels. The oral exams required him to talk for three solid minutes in Greek when he can’t even speak for two minutes at a time in his own language. Even if he lived at home and commuted to university, he could not cope with the pressure. It’s autism—you know, the disability he has. It gets in the way.

 

Here’s something else you may be thinking: If university is too hard for him and the LEA won’t fund him at the community college, why not pay for the course out of our own pocket?

 

A great idea. Here’s why: they wouldn’t let us. And when I found out that his Education, Heath and Care Plan meant he couldn’t just purchase education like any other private citizen, I went a little crazy inside.

 

And finally, you might be asking this: What does one’s ability to speak a foreign language have to do with one’s ability with IT?

 

A great question. I kept asking that. I was told he had to demonstrate that he was showing “stretch” and “progression.” Of course, taking a course in a subject you’ve never done before is showing stretch and progression but the LEA didn’t see it like that. They wanted him at Level 3 as a minimum. No matter how hard he tried, he couldn’t achieve Level 3. His teachers told me there was no chance. And while, they were happy to have him at Level 2 (other kids in his class were doing Level 2) they LEA would not agree. Because Nick had achieved Level 3 in two foreign languages, he was expect to study at Level 3 in IT. That was that.

 

I won’t bore you with all the events that transpired to enable Nick to stay in his course. They took days, weeks, phone calls to lawyers, meetings, assessments, and the kind of tenacity that wrings you dry.

 

More recently,  I’ve spent hours with Nick, pouring over textbooks and websites and blank screens at home in order to help him pass the course even at Level 2. It’s hard for him, but he’s doing it. He has remained in class. It’s worked out  reasonably well. But I am still recovering from the trauma of convincing the LEA to keep him there.

 

What do these kinds of events to a person over time? And now I am speaking of myself, not my son. What does it take from a person to have to constantly argue, cajole, convince, beg, and threaten? It is painful enough to have a child with autism, to watch as he struggles with things other children find easy, to know that the future is (at best) uncertain, to fear that at the time of your own death, your adult child will be in real danger. Must the people who are supposed to help thwart your every effort?

 

The woman at the LEA wrote long, horrible emails to me. I wrote long horrible emails back to her. She wanted him out of that classroom. I wanted him in.

 

I guess you can say I won, but it didn’t feel like winning.

 

How did it feel to this new young woman at the LEA to capitulate at last and allow a young man she has never met remain at a community college? It must gall her that he is now attending college against her will. It must anger her that someone with an A-level in French is doing a lower level course in Information Technology. Imagine how difficult it must be for her. Imagine how hard.

 

I bet she goes home at night and complains to her partner about parents like me: autism parents. Who do they think they are, standing up for their kids like that? Being willing to argue for as long as it takes, being willing to spend every waking hour, as though their whole lives are about helping their children?

 

Who are we? A significant minority, if we stick together.

 

 

 

 

 

 

 

 

 

 

work

Talent@War

 

The supreme art of war is to subdue the enemy without fighting — Sun Tzu

 

It started with The War For Talent, McKinsey’s 1997 announcement that the world of commerce was now at risk. With increasingly emotive language, McKinsey described a “severe and worsening shortage of the people” resulting in unfilled jobs, failed business objectives, skyrocketing compensations packages, and CEOs who could not sleep at night. All are vulnerable, they wrote in bold. And while it would be possible to win the war for talent, this could only happen if you “elevated talent management to a burning corporate priority.”

 

Did you hear that? Burning.

 

The problem was unlikely to resolve, not during the tenure of our working lives anyway. The forecast, grim and uncompromising, promised that “companies (were) about to be engaged in a war for senior executive talent that will remain a defining characteristic of their competitive landscape for decades to come.”

 

Why such an apocalypse? The reasons included a shortage of 35-44 year olds to replace the baby-boomers who were retiring, competition from smaller companies, and increased job mobility. Oh, there were people around, but not enough good people. Anyway, good was the enemy of great; good was the new bad. You had to get rid of good, explained Jim Collins in his 2001 book Good To Great; you had to rinse the cottage cheese (make tiny changes that add up). And you had to do it now. Don’t forget the sleepless CEOs, striving to heed Collins’ advice and get the best people on the bus. They could have fatigue-induced cardiac arrest—and who on earth would replace them?

 

Firing was as important as hiring. McKinsey was bold enough to state it outright: “Our research suggests that taking action to deal with poor performers is…the least exploited talent-building lever for any company.” Building talent through firing concentrates the talent, you see, increasing productivity of those remaining if only through necessity.

 

Letting go, constructive discharge, downsizing, there is no nice way to describe firing. But the important thing was to get rid of unwanted talent-blockers, even whole departments (blockages) through whatever legal means possible. Use velvet gloves; trot out executive coaches and outplacement advisors. Make a note that you have fired them so that you don’t accidentally re-hire them again in your effort to recruit the best talent. Rinse that cheese…

 

So how are we doing twenty years past McKinsey’s critical call to action? Is the war for talent over? It is, sort of. But all wars leave casualties. As Josh Bersin from Bersin of Deloitte explained, “The war for talent is over. The talent won.”

 

In case you are not aware, companies moved from the war for talent to a crusade for engagement. The word crusade sounds lofty, but it is important to remember that crusades are just wars with passion. In this new crusade, companies must become charismatic, irresistible magnets for the best people (not good, not even great anymore, but the best). Luckily, Deloitte can help a company become irresistible. After two years of research and discussions with hundreds of clients (where did they find the people to do this?) they uncovered five major elements and underlying strategies that makes organizations irresistible.

 

Compensation is part of it, sure. Breathe easy: you can still buy people. But salary is just “a hygiene factor”, not an “engagement factor.” You have to make the best and brightest happy, not clean. Work has to be self-directed, dynamic, creative, all the things we don’t normally associate with the word work. In fact, let’s not call it work anymore. Let’s call it mission.

 

How do we get people to join our mission? Of course, training and support, autonomy, “clear and transparent goals”, but you also need to create a “humanistic environment.” Admittedly, I don’t know what a humanistic environment is; Deloitte seems to have borrowed the term from studies run by dental schools, but I believe it means having respect and compassion for those around you.

 

Google’s idea, and one that could only come from this extraordinary thinktank, was to give engaged people time “to think, create, and rest” and, frankly, I’m already feeling the draw. But you can only give such time to the best people—those with passion and mission and purpose, those given to moments of brilliance and inspiration. There is no point in allowing people time to think if they can’t think. Those people have to go.

 

Luckily, automation is helping companies get rid of people who shouldn’t be given time to rest and think. Companies may still be losing the war for talent, but they are progressing on the firing front. Advancements in data allow companies to tag individual employees in various ways to predict whether they will be useful five or ten years down the road. Through a series of complex algorithms and predictive analytics, companies are able to sift through their mission-supporters and deselect those they wish to exclude from their flexible, person-centric, humanistic environments. With the removal of the good (enemy to great) and with a closely focussed digitally enhanced eye on the great, it is possible to clear the way for the best.

 

Or so we hope. Recently, McKinsey launched a new look at the war for talent (see The New War For Talent), explaining that many of the old problems haven’t gone away, and adding more challenges to the mix. It would seem that the talent is still not cooperating. The new soldiers on the talent-front are millennials and, according to Forbes, “Millennials don’t want jobs. They want lives.” If companies seek to recruit them, it isn’t enough to be irresistible and woo them. If you are lucky enough to succeed in wooing them, you have to convince them the whole enterprise is their idea. To that end, companies are striving to create an entrepreneurial culture, as 72% of millennials want to be their own boss.

 

What have all those managers and C-suite leaders actually achieved since 1997? Their expectations on employees were so high, their standards so rigid, their firing so efficient, they’ve convinced the new generation of talent to self-exclude. Maybe the talent didn’t want predictive analytics that value them one against the other. Maybe the talent preferred to make their own luck than be subject to constant evaluation. While recent graduates struggle to find any work at all, millennials are stepping away from opportunities. In an interview with McKinsey, Ann Robie, global head of Human Resources at StubHub said, “The future of talent is that people are not actually wanting to be employees.”

 

And so it evolves, as war often does. Perhaps we can no longer call it a “war for talent” or a “crusade for engagement.” The landscape has changed, the battleground no longer defined by its original architecture. What we see is that command control originates from the opposing side. We’ve reached the age of “talent at war”. Or talent@war, if you prefer. #NotInterested

 

Autism

Neurodiversity & Early Intervention

 

 

All human brains are similar in structure and function; it is the microscopic variation in how they connect internally, synapse to synapse, that defines our individuality and what we consider to be our “self.” What we hold in our imaginations, what thoughts are triggered by our senses, that make us uniquely ourselves.

 

In this way, we are defined not by our genes, but by our brains. To be sure, genes play their part, influencing the way our brains are formed and how we behave, but they are highly responsive to our environment and experiences. Even while we are in the womb, genetics are being affected by the way in which our mother is responding to her environment. Is she anxious? If so, we are likely to arrive in the world with a predisposition toward anxiety, ourselves, not necessarily because of genes but because of the endocrine processes that influenced our experience as a foetus. Is she hungry? Nutritional deprivation in the mother can create a child whose metabolism is so efficient that he or she can become obese far more easily than another child. The reason for this adaptation is that it enhances the likelihood that the offspring will thrive in the anticipated environment it is born. While the adaptation, called phenotypic plasticity, may be a manifestation of the human genome, our mothers experience was not.

 

We are all different, unique in small ways and large. These subtle distinctions among people in a population are sometimes described as “neurodiversity”. Neurodiversity is all about propensity and likelihood. The word seeks to embrace differences: intellectual strengths and weaknesses, various ways to respond to phenomenon, strong preferences, disparities in taste. It expresses the difference between me and my level of anxiety or happiness, for example, compared to you and your levels of anxiety or happiness.  In his 1987 book, Fears, Phobias and Rituals, Issac Marks likens the number of words in the English language that denote anxiety with the number of words the Inuit use for snow. Just as the Inuit encounter so much snow they have invented names for its many manifestations, we have done the same with our myriad representations of anxiety. The exact number of words that mean anxiety depends upon what you consider anxiety, of course. To give you some idea, Joseph LeDoux, a New York University neurologist who publishes extensively on emotions and the brain,  states in his 2017 book, Anxious, that there are three dozen English words that are synonyms or variants of “fear” and “anxiety”.

 

As anxiety is a significant feature in autism, let’s pause there for a moment. Freud saw some forms of anxiety as normal, manifested in  peculiarities or moods, while others were a source of mental illness,. Kierkegaard regarded it as both therapeutic and a sign of “some sort of disorder.” He writes that experiencing anxiety enhances one’s understanding of possibility and is part of a successful life.

 

It all depends on how much anxiety you have. It’s a spectrum, though not a linear one. I can be anxious about riding airplanes but not about riding horses. This makes no sense, nor does it show a degree, or depth, of overall anxiety that may or may not place me in the category of being an anxious person. If I have enough anxiety about a great variety of things, however, I might be considered an anxious person.

 

When might one’s anxiety require some kind of intervention? Perhaps Kierkegaard can tell us something there, too. LeDoux  acknowledges Kierkegaard’s belief that a well-adjusted person faces anxiety and moves ahead. In other words, anxiety isn’t pathological unless it stops you, limits you, keeps you managing your life successfully.  Maybe we should adopt the same notion.

 

We can look at depression in a similar way. Everybody gets depressed—how deep must a depression be before a person is considered ill with it? Those with serious, debilitating depression might get exasperated by those who say “I’m depressed” when what they really mean is that they are in a bad mood or disappointed or even just bored.  Of course, we know the difference between suicidal depression and someone who is having a bad day. But where is the point at which we can decide that a person who suffers a low mood on a regular basis is diagnosable as “depressed” or, to create a more global and apparently permanent description, that he is “a depressive”?

 

Fear, anxiety, low moods, even bouts of short-lived depression are perfectly normal. Would the notion of neurodiversity mean that even in their more extreme manifestations we must not seek to interfere with the progression of such conditions? Or would those of us who advocate we embrace a world that is accurately described as neurologically diverse understand that treating a person with anxiety or depression is not a judgement against, nor a damnation of, the people whose experiences of these conditions hinders them in life?

 

Now, I come to autism. Always to autism. Here is a word that has sometimes been used to mean a person who is “quirky”, who may be very focussed on a single subject to an extent that he or she finds it difficult to talk about anything else. This person—let’s say he is a teenager—may also have certain fears or anxieties. He may have lifestyle habits that differ from the norm. Perhaps he finds social situations awkward or confusing. Certain sounds, textures, lights, and levels of crowding may affect him. He may find school difficult, or find it hard to make friends. He could perhaps decide he is on the autistic spectrum. Or maybe his parents take him to a specialist and he gets a diagnosis of Aspergers Syndrome (back before the DSMV did away with the term).

 

This doesn’t mean the teenager has what I think of disability. The very dated word, disability, suggests “inability” and this person is not incapable of managing his life. He has some challenges but the scope of those challenges, however uncomfortable at times, may be balanced with other strengths that his particular, unique brain offers.

 

In his highly engaging and beautifully argued book, The Age of the Infovore, George Mason University economist Tyler Cowen suggests that autistic people who have a tendency to impose structure on data, may be at an advantage in today’s world with its increasing emphasis on information. He rightly states that there is a joy to organising information, whether you are autistic or not. He also argues that the notion that autism is necessarily an impairment is wrong. “There is a deeper approach that sets autistics into broader understanding of the human condition, namely as striving people who learn all sorts of wonderful things, know many kinds of joy, and experience tragedies large and small.” Who can argue with that? Just as Kierkegaard argued that experiencing anxiety was important in attaining success in life (“Whoever is educated by anxiety is educated by possibility”), Tyler argues that there are a great number of advantages for an individual with autism, and even more for society at large. His myriad examples of the way in which we have misunderstood neurodiversity, have prejudiced ourselves against a group of people, and have completely mischaracterised the way they think and feel, makes for stunning reading.

 

However, Tyler’s description of autism doesn’t entirely match that which I’ve experienced in my own life with my son, who was diagnosed at the age of three. My son had no language—verbal or otherwise. He did not respond to spoken language, not even his own name. He spun objects in front of his eyes and isolated himself. He was often unreachable, zoning out as though no one else was in the room. He cried a lot. He did not seem to be developing mentally or emotionally. He missed many significant developmental milestones. He was not “quirky”, in my view. He appeared to present something far more theatening to his future than an idiosyncratic brain function, or neurological difference. He seemed neurologically impaired, cognitively impaired.

 

There is no question that in my experience autism presents “a lot of problems and bad outcomes”, an expression that annoys thinkers like Tyler Cowen, who argue that understanding autism as a disorder is fundamentally misleading. Tyler writes, “If we define autism in terms of its problems, we will find it harder to understand how those problems come about, how to remedy them, and how to appreciate and build upon autistic strengths.” I cannot see the causal link between defining autism by its problems and preventing us from understanding, remedying, etc. I agree with him that defining autism by its problems creates an unfortunate social stigma and may demoralize parents and educators who would otherwise be willing to make an effort with their children with autism.  Too often, children with autism are excluded from schools, events, or social groups. My son was the one person in his Chinese language class in secondary school who was not invited on a trip to China. Why? Because they didn’t think they could ensure his safety—or so they said. He wasn’t invited and we didn’t argue. Why would I send my son to China with a group of people who didn’t want him there? You might wonder how we explained to him why he could not go. Sadly, we didn’t need to. He’d always assumed he would not be invited.

 

This isn’t an unusual situation. People are often wary of someone with autism. While I am happy to report that there are a great number of groups that  will include people like my son even though his is autistic, they will only do so as long as he can act like he is not autistic. That’s a bit of a trick. And Nick is considered “high functioning”. The reason we wanted him to go to China was because he speaks Mandarin. What chance would someone whose condition presents a more complicated picture? Who couldn’t speak at all? Tyler Cowen knows the answer, I’m afraid. As long as we “define autism in terms of impairments or failed outcomes” we end up using the “hammer of science to brand a group of people as ‘inferior’ as a preordained social consensus.”

 

He’s right. But these impairments are very serious. I would paint a very distorted picture if I only spoke of  the teenager with Aspergers who may find certain aspects of life difficult, but whose overall condition may be just as “normal” as any neurotypical person, if indeed we can use the term neurotypical.

 

There is also the autistic person who manifests more traits on the spectrum, including many of the complex ones associated with social and communication impairments and cognitive problems. The “autistic spectrum” is often presented in a linear manner, with the teenager being described as “very high functioning” while the second person is lower down the line. However, the spectrum charted in this linear fashion is not accurate.

 

Remember my description of anxiety—a person can be anxious about riding planes but not about riding horses. A person can be anxious about work but not about their appearance. These are trivial examples of manifestations of anxiety that may have real consequences in a person’s life, but do not render them generally anxious. Nor could we say which person is more anxious—the one worried about work or the one worried about planes.

 

Autism is much the same. We meet people with certain traits and others with very different traits. As Steve Shore of Sonrise program has said, “When you’ve met one autistic person, you’ve met one autistic person.” It is difficult to generalise. Even Temple Grandin, who famously described all autistic people as thinking in pictures, has retracted this generalisation, along with many others.

 

Tyler Cowen does a great job of showing the strengths of autistic people as thinkers and contributors to society, as well as the need to embrace neurodiversity. “Please do not talk about autism as if it is a broken arm, a defect to be repaired or destroyed and nothing but a plague upon the world,” he writes. I have been guilty of describing autism in exactly this way, seeing the manifestation of autism in my son whose development was arrested at an early age and who, by all appearances, was unable to learn. I saw autism as an impairment because it appeared to be so. Why couldn’t my son speak? Autism. Why wouldn’t he play with toys? Autism. Why didn’t he respond to any spoken or non-verbal language, even his own name? Autism. Why did he spin, rock, “self-stim” and disappear? Autism. It was hard not to see it as an impairment. When every other three-year old is speaking to their parents in sentences and you can’t get your son to notice you in a room, it certainly feels like an impairment.

 

For me, his lack of development was also a call to action. We embarked upon an intensive intervention of him because we couldn’t imagine his future if we did not. If we dared hope he might develop into an independent adult, it required us to teach him all the things he appeared unable to learn on his own—like language and communication, like play and physical activities (throwing a ball, jumping on a trampoline). Otherwise, he lied on at the carpet and moved trains or cars in front of his eyes. Should we have done nothing, instead, as an indication that we accepted him just as he was?

 

I don’t think so. When Tyler talks about those on the spectrum who have been described by researchers as having  weak executive function or “weak central coherence” as a subsection of a much larger group of autistic people, I recognise my son as part of that subsection. Had I not imposed upon him the incredibly intensive, exciting, demanding, exhausting education that helped him learn language and play and music and social skills, I think we’d be in a very different place right now. Or rather, he would be.

 

Can I both embrace autism as a “difference” while doing everything I can to lessen its negative aspects?  Maybe not. But it seemed to me that my son was entitled to an education and therefore I provided it. To decide not to intervene would have been  as much a manifestation of my own prejudices and assumptions as was the provision of an early education that gave him an opportunity of him to learn what “neurotypical” children learn. If there was a means by which I could enhance his language skills, why wouldn’t I intervene, and urgently, too?

 

So, how do I reconcile these two thing: embracing autism while simultaneously identifying what I judge as deficits and addressing them in the most positive, affirming way I can?

 

I’m not sure I have an answer other than to point out the obvious: that my son is not a thing, but a dynamic, living, evolving person. The phrase, “accept him as he is” assumes that he is a static being.

 

He has surprised us at every turn, not only in demonstrating an aptititude for learning that far surpassed anything we could have imagined at the time of his diagnosis, but by bringing into our lives his passions and enthusiasms, and for showing us that almost everything we once imagined about what it means to be autistic is wrong. Strangely enough, he and I still talk about language every day–how do you say, “I want to go to the museum” in Arabic, I ask him. “Can you look at this for me?” I say to him. “It’s in French and I cannot understand.”

Autism

Alfred Hitchcock And How To Teach Autistic Children

 

 

Alfred Hitchcock has something to tell us about educating children—I know that is hard to believe.  I learned that during the film-making process he worked off two scripts. He had the normal script, what he called the “blue script”, which included all the parts of an ordinary script: scene locations, dialogue, action, character names. But he also had a “green script”, and this was much different. The green script kept track of the emotional aspects of the film, what he wanted his viewers to feel as they watched the film. The logistics of the blue script—the action, props, setting, lighting and camera angles—could be changed, but the green script was more important. His focus was on how the viewers felt, whether those feelings were excitement, intrigue, fear or relief.

 

The emotions of a child are always what matters. As parents and teachers, we have to be focussed on the “green script.” Most children are born with a powerful desire to learn, a curiosity about the world, and a need to engage with everything within it. However, even with neurotypical children, our schools mostly fail to foster this natural curiosity. Among regular high school kids, some studies indicate that only 37% of kids are engaged in their subjects. This may seem like a digression from talking about autistic kids, but it isn’t really. Former Dean of the Ontario Institute for studies in Education, Michael Fullen, who advises policymakers and local leaders around the world to provide leadership in education, tells us the solution for education is “to be irresistibly engaging for students…”

 

If this is the case for a neurotypical child, it is a hundred times more so for one with a learning disability or autism. It makes no difference if a child learns to speak in sentences today or tomorrow, as long as he is progressing. It makes no difference if he learns to clap or sing or point or clap or sing, as long as he is moving toward a goal. But that goal isn’t really about speaking or pointing. It’s about the learning process itself, about influencing how the child with autism feels as a learner.

 

What matters is that he speaks because he has learned that speaking is fun, useful, and that he can do it. He points because he wants to share something. He repeats all these behaviours and comes back to learn more because he likes to learn and is enamored by the process.

 

I’m not arguing with anyone who wants to bring their children through all the important developmental milestones. I am not saying that pointing or speaking or counting or reading don’t matter—they do. I remember all too well what it was like to have a non-verbal child who couldn’t point or communicate in any way, screaming on the floor. It was sheer hell.

 

However, we don’t have to sacrifice the emotional side of learning in order to achieve specific outcomes. We really need to value the green script. It tells us that when we are teaching a behaviour—pointing for example—that the child must feel pleased with this pointing stuff, happy to comply, and enjoy it so much he or she will want to point in the future. Let’s start with pointing for an object he wants but that he cannot reach. Let’s move onto him pointing to share information. This is all good, but only if he feels great about pointing, great about the person who is teaching him, and great about learning.

 

So, there are really three scripts here. What he learns, how he feels about the people with whom he is learning, and how he feels as a learner.

 

Every time I work with my son Nick—and this has been going on over a dozen years now—I think about the process of his learning. The process is the most important thing. If he feels confident and curious as a learner, he will carry on learning years after I am gone. This is what matters to me.

 

I am looking for signs of stress because if he is getting stressed he is not learning. Stressed adults don’t learn well, and for children it is even more profound. If a child feels threatened or worried it affects her ability to learn the thing in front of her, and plowing on regardless will inform her future response to the process of learning, itself. Oh, she will still learn. But she will learn to fear the situation (the people and setting and materials at hand), and not much else.

 

Not all stress is bad. Writing on the Johns Hopkins School of Education website, Victoria Tennant says, “Stress is positive when the person feels stimulated and able to manage the situation. This positive response prepares the body for action and activates the higher thinking centers of the brain. A positive response to stress can provide the energy to handle emergencies, meet challenges, and excel.”

 

All of us love a little stress—especially kids. They often like mildly scary movies or short rides at theme parks that whizz them up or spin around. My son loves electronic games which create a world of threat around the player who is trying to survive. I asked him just now why he likes them so much and he said it helps his focus and attention.

 

I can remember all those years ago when I would ask him a question without a specific rote answer and hope he could say anything, even “I don’t know”, which had to be taught to him like everything else until he fell in love with learning.

 

But back to stress. Ongoing stress, especially in what is supposed to be a learning environment, creates poor learners of children. For autistic children, stress can switch them off so fast that an entire teaching session is lost. Repeat that stress, and their relationship to learning and to the people who insist upon it will be seriously damaged.

 

This is why any interaction with children in education has to be positive. Goals have to be attainable; success has to be ensured. There is no place for coercion or intimidation with children—they will only learn to avoid teachers and anything they associate with a soured experience of learning. For children with autism the stakes are higher. They need skills that they cannot access without help, so that help—in the form of parents, teachers or therapists—has to come with positive feelings.

 

Those who criticise the use of applied behaviour analysis (ABA) do so because they imagine it is coercive or very boring. It can be. So can all teaching. Years ago, I spent a morning in my daughter’s year 2 primary class. The kids were treated as though they were little criminals under gag orders. Their only hope of getting through the day without being criticized or humiliated was to say nothing “out of turn.” One cannot imagine twenty-five adults in a room “being taught” and saying nothing (no movement, no goofing off) for hours on end, yet this was expected of seven-year olds.

 

It was appalling. I removed her from the school the next day and home-schooled her for a couple of years before starting her again elsewhere. She’s now a very high-achieving young adult, despite a poor start at what amounted to a contemporary example of Victoria schooling.

 

I couldn’t take such chances with my son. Had I seen ABA being “administered” in a manner that upset him, I would have stopped it immediately. But this wasn’t what happened. Instead, we kept one eye on the blue script—what he really needed to learn—and one eye on the green script—what we wanted him to be feeling while learning.

 

And now he loves to learn, which is a good thing because it is clear that life-long learning is going to be vital for all of us as our society moves ever more swiftly. And because, even at the age of twenty, he is forever catching up.

 

I will never forget begging a committee at his high school to let him study at A-level, trying not to cry as I explained that while he wasn’t necessarily A-level “material” he loved his chosen subjects and ought to be allowed to continue. They stubbornly insisted that he couldn’t get an A-C grade and that he wasn’t welcome to continue. I   became increasingly exasperated with the notion that the anticipated grade should be the criteria by which they made their decision whether he could continue. Finally, I told the committee that if they won’t allow him to study any longer at his own school, they would have to tell him that news, because I would not.

 

In the end, they allowed him to study after all. He later achieved a total of two A-levels and four additional GCSEs, some of them A’s, some of them C’s. He loves to learn, and believes he can learn. This is what we need for all kids–especially those with autism, who cannot afford to ever stop learning, and for whom the world of things, people and ideas must be imagined as a place to understand with joy, not a threat to be avoided.

 

 

 

 

Autism

Autism: Say Hello to Grandma & Other Things I didn’t Teach my Child with ASD

 

You have to hand it to kids with autism: they won’t tolerate being bored. From early in life my son made it clear that if a person wasn’t interesting, he would disregard them. Visitors arrived to the house but he stayed where he was on the floor, pressing his thumb into the carpet, swiping a train in front of his eyes. If someone said hello to him he might look up. But if the greeting was followed by nothing particularly interesting, he saw no reason to stand up, say hello, much less smile.

 

Oh, I could get him to do so, of course. I could walk over to him, take him by the hand, lead him toward the visitor. He was a particularly compliant kid for one with autism. Once he was able to speak, I could even encourage him into a greeting. “Say, hello!” I’d instruct. “Hello,” he’d say, flatly.

 

But that was just a prompted greeting with nothing to encourage him to repeat the behaviour. He didn’t want to say hello. He wasn’t invested in it.

 

In a neurotypical child, working through a rote response might cause him or her to feel dutiful or grown up. It might  encourage the habit of social greetings, in fact, as the child learns there are social benefits to being polite.

 

But rote social greetings didn’t do much for Nick. Not at first, anyway. At that time there was no social benefit, you see. He didn’t really care.

 

Sand running through a glass timer was interesting. Certain shapes—in my son’s case, circles—were interesting. He collected coins, bottle caps, checker pieces, buttons. You’d find tiddlywinks and milk bottle tops bingo markers hidden under the bed. He’d throw all these things in the air, collect them back up, throw them again. It delighted him, but he didn’t share the delight with anyone else. He didn’t say, “Look at this!” He didn’t say anything, in fact, because he couldn’t. However, not even his non-verbal communication invited me.

 

He should be interested in people, we were told. That is what is wrong with him. I agree he should have been interested in people, but those who were monitoring the extent of his autism and everything else about him were wrong to imagine he wasn’t interested in people. His threshold for what made them interesting was just very high. People had to do something to be interesting. They had to do more than just be.

 

I’ll give you an example. Back to his grandparents…they would arrive to the door. First, they would greet their own son (my husband), then me, then our daughter, and finally Nick. There was no changing this, by the way. The grandparents were more rigid than my autistic child. If I tried to persuade them to say hello to Nick, to get down on his level, to think of something rewarding to associate with their arrival, they looked at me as though I was being rude. Grandparents were to be respected, not instructed.

 

They wanted Nick to wait a reasonable amount of time it took them to get inside and speak the adults before turning to a child. That was how it was done. That fact that his attention span was about five seconds, after which he lost interest, was something he needed to learn to expand. And had he been neurotypical, he would have expanded it. Or he would have called out to be heard, ran up and hugged his grandparents, bursting through whatever barrier existed in order to get the attention he craved.

 

But he did none of this. The value of the interaction was so low that he walked away.

 

Once the grandparents settled down in the living room with their tea and their talk, they may as well have been pieces of furniture they were so boring. He didn’t want to show them his toys like our daughter did. He didn’t want to show them his drawings or the clay model he made or the award he won at school. It wasn’t simply because he didn’t draw or sculpt or win any awards in school. He didn’t seek their praise because it didn’t really matter to him (though I must add that it would very much matter in later years).

 

Anyway, he had stuff to do. We called his flapping his hands and strange ways of looking at objects close up to his eyes “stimming.” He might have called it “fun.” Anyway, he had to do something with his time, right? And before we started the constant social stimulation and learning through a play-based ABA programme, he didn’t have the imagination to go beyond very simple means of occupying himself.

 

Sometimes, he didn’t seem to be doing anything. He would zone out entirely, staring into space with such apparent disregard to those around him that the head teacher in my daughter’s primary school once remarked that “there didn’t seem to be a lot going on.”
Maybe there wasn’t. He was autistic. Not “high-functioning” either, not yet. He would grow into the HF label, but that took a year or two of hard work. Hard for him, because learning was quite difficult for him (at first). Hard for us because we had to be super fun and engaging, proving him to him over and again that interacting with people was worth it.

 

I keep hearing people who dislike applied behaviour analysis (ABA) as a teaching tool for autistic children because it is “dehumanising” or doesn’t take into account the way the child feels. But that was not how we were taught to teach our own child even seventeen years ago, when we began. We were always looking for how Nick felt as a learner, as a beloved child, as a person who is deserving of respect and care, but also deserving of an education.

 

We had to somehow persuade our son that people were fun, that learning was fun, that communication was fun. We had to convince him that experiences were always enhanced in the company of another, that games were best when shared. Did it work? Hell, yes, it worked. He loves being around people–the problem we have is that there aren’t that many kids his age who really want to be around him. He even shares computer games. “Hey, it’s your turn, Dad,” he now says, passing his father an electronic game of Scrabble on his iphone. He doesn’t want to play by himself.

 

 

Autism

Why You Shouldn’t Wait For An Autism Diagnosis

 

My son was diagnosed with autism early here in the United Kingdom, where the current wait for an assessment for autism is over two years. In fact, Network Autism recently published an article indicating parents “tended to wait around 3½ years before receiving an autism diagnosis for their child.”

 

Our appointment at the now-defunct Battle Hospital in Reading was pushed forward because I’d embarked on a programme of early intervention with Nick, something the health authority in my area felt was egregious and unethical. It turned out that if you began teaching your child as though he was autistic without the actual diagnosis, it triggered alarm bells in the system. That isn’t a reason in itself to embark in a programme, but some parents currently enduring that two year wait might want to go ahead and embark on a programme of early intervention before the diagnosis. Why?

 

Because teaching your child is always a good thing. And because, in my experience, it can sufficiently annoy people that they bring the diagnosis forward so that they can apply their own notions of therapy.

 

Beware, however. Their good ideas may not be any better than your own. In fact, they may not have any good ideas at all.

 

I am often asked what we did for Nick in those early years. The combination of interventions we used fall generally under the category of Applied Behaviour Analysis. In short, ABA doesn’t ask what caused the autism. It is in direct opposition with the psychodynamic approach, which seems to me wholly inappropriate (if not scandalous) for young children with autism, though that is for another blog.

 

ABA looks at how to address all the deficits a child with autism has, whether those deficits are in attention, social interraction, language, play, or in how to use their body. It should NEVER use coercion or intimidation or “aversives” (punishment). The skill of a good therapist is in making the learning experience fun, not frustrating. Done well, it’s fantastic.

 

Most people think of ABA as drills. (“Touch the table.” “Well done.” “Touch the table.”) That is not how ABA is done—not in my house and not in any of the houses of parents I know who have embarked on such programmes. These days, good ABA is wildly imaginative, “out-of-the-box” therapy in which a person with a whole lot of knowledge of normal child development escorts a young child 1:1 through the milestones he or she has missed. You’ll know if it is good ABA because a child will love it. If he or she does not, fire everyone involved (and get retrained yourself).

 

 

In some ways, ABA is just like any parenting and coaching—just better, more informed, and with more of an eye on how our child was feeling during the learning process. My husband, our therapist, and I even used ABA to teach Nick how to ride a bike, for example. We did this not because riding a bike is essential to a child but because the balance and coordination required is very useful. We also hoped that he’d like it, once he “got it”.

 

It took a long time. We nearly collapsed with exhaustion on several occasions. However, Nick learned and he now rides his bike with the same ease as anyone else. How did we do this? We looked for external rewards (the bike was not at first intrinsically rewarding as it is with a neurotypical child) to incorporate into the process of bike riding. We formed a large cheering squad of well-wishers (or at least three of us) . We did it with patience and fun,  and with a view to how he was feeling throughout the “lesson.” Same as everything else we taught him, frankly.

 

But you won’t start with a bike. You may start with trying to get the child to notice you in the room. And the people who are supposed to help you (the diagnosing paediatrician? The health authority? The local education authority? Someone? Anyone?) probably won’t help you, though please let me know otherwise if you have a good experience because I would be thrilled to hear it!

 

If you are in the UK, think about giving the people at Child Autism a ring. I visited them back when they were called PEACH and Nick couldn’t talk or play or interact with anyone except me (and usually only to sit on me).

 

They helped me. I didn’t use any particular programme they were selling, but I did get a lot of encouragement. Their reading list is good on its own (though they might want to include the novel, Daniel Isn’t Talking, if only for inspiration).

 

You can check out an entire youtube channel from the Autism Behavioural Intervention Association to watch ABA in action with autistic children. I cannot tell you how much I wish I’d had this resource as a young mother.

 

Are these therapists perfect? No. Sometimes, they concentrate too much on discreet trials. Sometimes they are too verbal for the child with autism. They can forget to reward non-verbal communication or fail to wait long enough for a child to work something out. They are humans, after all, and they are on camera. But most of them are good. Very good. If you watch them you, as a parent, you will learn. And even if you don’t “do ABA right”, your child will learn, too.

 

Here is another reason not to wait for the diagnosis to start teaching your young child with autism: the diagnosis isn’t initially all that helpful.

 

For us, the diagnosis was a gruelling two hour procedure during which they tested our three-year old in various ways which were entirely ridiculous as he wasn’t paying attention anyway. They probably knew he was autistic in the first two minutes but went ahead and tested him for other, additional deficits. I really don’t know what they were doing, other than satisfying themselves that he was an uneducable timebomb that would grow into a somewhat dangerous member of the family from whom we’d need to protect our other child.

 

Why do I believe they thought that? Because they told me so.They said Nick’s IQ was low, that if he developed any verbal language at all it would be purely functional. They said only kids with Aspergers have any hope of higher education.  Concentrate on my normal child, they advised, as though Nick were already a lost cause.

 

They also told me using applied behaviour analysis to help him would mean I trained him to ape the development of a neurotypical child, ignoring the fact he had a permanent, insurmountable disability that required the sensitive handling of one of their own professionals. They were wrong about all of this—time has proven as much.

 

Luckily, I am a tenacious, hard-headed, opinionated woman. I was even back then in my early thirties. While they were assessing Nick,  I was assessing them. I decided they had no ongoing interest in helping children with autism. The paediatrician was there to sort through children, discarding some, referring others. Nick was pretty much on the discard pile. Even in his best Winnie-the-Pooh jumper and shiny Clark’s shoes.

 

“Research shows ABA works,” I told them. “If you embark on an intensive programme and generalise what the child learns into lots of environments—”

 

They disagreed. They’d done their own research. It didn’t work. I might have considered one of their own professionals but they had no one available—and nothing was on offer except possibly a place for Nick in a special school nursery within the next six months. Ah, a special school nursery! Surely, that would help him, right?

 

Wrong. They didn’t really have great ambitions to help Nick. They wanted him to interact with other children, but those children had to be autistic, too, because Nick was autistic. Nursery school wasn’t really school and it wasn’t really play. It was just a place to put these kids.

 

Was “autistic” some special social group, a subset of society that required their own closed quarters? If he interacted with another child (which was unlikely at that time) and the other child didn’t respond (very likely), how did that help Nick?

 

It didn’t. It helped the local education authority tick a box or complete a file. Maybe they thought they were doing me a great favour by relieving me of my awkward child for a few hours a day. Who knows what it helped. Not my son, who needed help urgently, who was now missing milestones at a rate of knots even with the ABA (because neurotypical children develop faster than autistic kids playing catch-up), and whose social isolation and remoteness from the family had been decreasing since we began the intervention.

 

Which brings me to my third reason not to wait for a diagnosis: you don’t have the time. Your child doesn’t have the time. The brain remains plastic for his (or her) entire life, but the best time to encourage learning and to improve your child’s relationship and access to learning is as early as possible.
I carried on with the ABA. The local authority hated me, the wretched special needs coordinator hated me, a whole host of speech therapists who never taught him anything but arrived every few months to audit his progress, hated me. Or maybe not “hate”. They resented me and talked about me and disapproved of me and discouraged me.

 

Eventually, I began to hate them back. We’d squabble over little things. The special ed coordinator wanted me to teach him to communicate using PECS (picture exchange communication system) instead of words, even though he’d been picking up sounds and trying to make words since we began ABA.

 

“Why should he use pictures when he can talk?” I asked.

“PECS are very useful.”

“So is language.”

“PECS are language.”

She was right about that. PECS are a form of language. So is sign. So is screaming on the floor. But I like words.

“I mean verbal language,” I said.

“Why is it so important that he talk?” she demanded.

“Because he can.”

Did I need another reason?

 

Clearly, I was insane to teach this child through ABA when I was not a teaching professional nor a psychologist. I hired private ABA specialists (a couple of whom also hated me, but that is another story) and had them teach me what to do. I kept records and when Nick’s proress was so fast that the record-keeping became onerous, I dropped that.

 

By age 4 (1 year from being non-verbal), he was regularly speaking in sentences of 5-10 words. By then, I’d hired teenagers and was training them to interact with him for an hour or two at a time so I could have a break. We had a 4th birthday party, all those young therapists and Nick. He stood on the chair and blew out the candles. He smiled at all of them.

 

There were no children present. I wanted him to have friends—of course, I did. But what could I do? Other parents mostly avoided me just in case I asked if their child would like to come over to play or go out to an event with us. Nobody wanted to hang out with me. Why wasn’t my child in special school anyway? What was wrong with me? Was I in denial?

 

Yes, I was in denial. Or maybe I can beef up the description and say I had vision. If you are going to embark on a many-years project without any support from anybody you aren’t directly paying, you better have vision.

 

I remember that nursery at the hospital. We saw it on the winter morning in December when he received his diagnosis. Through the window on the door, under the laboratory-style lights that hummed rom the ceiling, there it was: a chaotic room of clearly very unwell children. Neorological abnormalities, chromosome abnormalities, bizarre ways of moving and standing. They weren’t playing or interacting with each other, but moved around one another a bit like how Richard Feynman describes atoms moving, like little particles “in perpetual motion, attracting each other when they are a little distance apart, but repelling upon being squeezed into one another.”

 

Any one of those children on their own would have presented a teacher or therapist with a world of possibilities and hope. Crowded together in the awful classroom on the ground floor of the hospital, they seemed doomed. How many months would go by before their parents moved them to yet another room? Then another? And at what point would these parents cotton onto the fact nobody was actually going to try to do very much for their child? They couldn’t, you see. There were too many of them. Anyway, it was more important to accept their condition, wasn’t it? Much better to accept it than improve upon it?

 

Not for me. All neurological conditions are very serious but some are far more profound. I know there are conditions about which I could do nothing. However, it seemed to me that to agree with the special ed people and the grossly incompetent paediatrician that Nick’s condition was already a done deal, that no significant progress could be made, was an assumption with little scientific backing. Yes, he was a non-verbal three-year old who swiped trains in front of his eyes instead of rolling them across the floor, who flapped his hands instead of waving, and who did not respond to a single word I said—not even his name. But he was only 3-years old. I could accept he was autistic, but not uneducable.

 

I didn’t wait for a diagnosis. When it arrived, I didn’t follow the advice of those who gave it. I am not telling any other parent how to raise their child. But what I will say is that in my experience, dedicated parents who teach their children are the best teachers around. You can do this—you may not see your child develop so well that he or she loses the diagnosis of autism (though I have seen this in some children). I’m not sure that should ever be a goal, as many autism traits are really quite useful if they aren’t accompanied by all sorts of impairments often associated with the condition.

 

However, in my experience a child with autism who is engaged and communicative is a far happier adult, with far more possibilities for his future.

 

The Writer's Life

Let’s Study Philosophy In Ireland…

 

My sister and I are as different as can be, with opposing values and political views. She cares almost exclusively for things and very little for ideas, unless those ideas can somehow be monetised. I grew up reading poetry and novels while she read business books and Vogue. She’s always considered me recalcitrant and spiteful because I value ideas more than money. I remember telling her that I was going to study English and American Literature and Languages at Harvard and she told me I should study economics as it was the only useful degree that Harvard offered.

 

I didn’t think economics was for me. This was the early 80’s before people like Tyler Cowen,  Tim Harford, and Stephen D. Levitt made economics so interesting that we are all eager for their next book or blog. I wanted to be a writer—she thought that was a bad idea. A dreadful idea. I didn’t disagree it was a bad idea, but it wasn’t really an idea at all. For me, writing was a portal into ideas, a means of engaging, of joining the conversation if you wanted to, or sitting in the audience as a reader if you did not.

 

As adults, my sister and I have gone our very separate ways, but I was reminded of her today when reading this Guardian article by Charlotte Blease. It’s about the result of Ireland’s president, Michael D. Higgins, who has finally triumphed after a 3-year campaign to introduce the subject of philosophy into the school curriculum in Ireland. I am delighted by this decision, because I agree with Bertrand Russell that, while “philosophy bakes no bread”, nor draws definitive conclusions, it has a positive effect on those who take it seriously.

 

Let me start by saying my sister, like many Americans with her political beliefs, does not approve of reading the Guardian in the first place. I no longer receive reading advice from my sister, but on several occasions she has warned my daughter not to read The Guardian as it is way too left-wing. It has articles like this one, for example, that suggest that within the curriculum of secondary education we include philosophy, which at first glance appears far less useful than computer science, engineering and robotics. How is America meant to compete with China if all we do is consider useless, dusty old ideas?

 

I don’t mean to pick on engineering and robotics. I  just wrote a piece on big data, marketing analytics and robotics, as a matter of fact, and I kind of like the stuff.  I am not suggesting we ignore education that has practical applications, not at all. In fact, among my many contributions to the world of education is my singular tutorship of my second child, Nick, who is learning the programming language, Python. Let me make it clear: when it comes to learning stuff, I am game. I’m game to evolutionary biology, the history of science, psychodynamic theory, computer science, neuroscience, neuromarketing, politics, and linguistics…. I’m even game to game theory. If I can learn it, I want to learn it.

 

But here is the thing. I don’t consider art to be soft stuff. I don’t believe that intelligence can easily be measured on IQ tests (there are several good books on this topic) and I say this as someone who does well on those tests. I value my daughter’s ability to make make a film of a criminal bunny shooting vegetables in a market, and I value the syntax of required to code. It’s all good, in my book.

 

But philosophy is particularly amazing to me. As the Irish president, Michael D. Higgins said in November during a celebration of World Philosophy Day, Philosophy is one of the most powerful tools we have at our disposal to empower children into acting as free and responsible subjects in an ever more complex, interconnected, and uncertain world.”

 

I don’t know that it is possible to monetise philosophy (though Derrida and Barthes managed to become rock stars somehow but I am delighted that Higgins looked beyond the immediate utilitarian notions of many in the field of education and understood that while we do, definitely need engineers, we need engineers who can think about something other than physics and computer models.

 

It is important to consider the question of the value of philosophy in view of the fact that many men under the influence of science or of practical affair, are inclined to doubt whether philosophy is anything better than innocent but useless hair-splitting distinctions, and controversies on matters concerning which knowledge is impossible.

 

I read this in Bertrand Russell’s 1912 book, The Problem Of Philosophy, on a page that discusses the apparent dichotomy between “the practical man” and one who considers ideas just as important, not because the ideas are of immediately material use, but because they change the one who considers them.

 

1912. Before Hiroshima and Nazi Germany and two world wars. In retrospect, we can see how philosophy, knowledge, the consideration of right and wrong independent of their expediency was so desperately needed then. Is it any less needed now?

 

 

Autism

A Broken Piano

My favourite piece of music is Keith Jarrett’s Köln Concert, an hour-long piece improvised, as all of Jarrett’s concerts are, on a solo piano in front of a live audience. You know the story, right?

 

For the concert, he’d requested a particular piano, a Bösendorfer. The Bösendorfer originated in Vienna early in the nineteenth century. It is said to be the first concert piano able to stand up to the playing technique of the young virtuoso, Franz Liszt, whose tough, unforgiving treatment of the pianos he played destroyed them in short order.  Perhaps the Bösendorfer’s durability was the reason Jarrett requested one for the concert. The 29-year old jazz musician was known for his eccentric stagecraft, his improvisations played with enormous athleticism and physicality. It’s fair to say he is tough on an instrument, that he plays unconventionally, even wildly, racing over the keys, standing up, sitting, leaning, panting, moaning. His performances move him—and anyone listening—through the disorder and miracle of creative endeavour.  Watching him is watching genius itself, that raw work that is cleaned up only by its imitators.

 

In short, he needs a good piano.

 

January 24, 1975. Jarrett arrives to the venue the afternoon of the concert, He is presented with his Bösendorfer. He stands with Manfred Eicher, the man who will one day found ECM Records and who arranged Jarrett’s sell-out concert tour. The piano he has been given for the concert is a Bösendorfer, all right, but it is puny, ancient, totally unsuitable.

 

Jarrett taps a few keys and finds it is not only the wrong size, incapable of producing enough volume for a concert performance, but also completely out of tune. The black keys don’t all work. The high notes are tinny; the bass notes barely sound and the pedals stick.

 

Eicher tells the organizer, a teenaged girl named Vera Brandes, that the piano is unsuitable. Either they get a new piano for Jarrett, or there will be no concert.

 

In a panic, the girl does everything she can to get another piano, but she can’t find one in time. She manages to convince a local piano tuner to attend to the Bösendorfer, but there isn’t much they can do about the overall condition of the instrument.

 

In the end, Jarrett agrees to play. Not because the piano was fixed up to the extent that he felt comfortable performing, but because he took pity on poor, young Vera Brandes, just seventeen years old and not able to shoulder so great a failure as losing the only performer on a sold-out night.

 

So he performs on the dreadful instrument. He does what he has to do, not because he thinks it will be good, but because he feels he has no choice.

 

Tim Harford, the author of Messy: The Power of Disorder to Transform Lives, describes what happened next better than I can, so I will quote from his wonderful book. “The substandard instrument forced Jarrett away from the tinny high notes and into the middle register. His left hand produced rumbling, repetitive bass riffs as a way of conveying up the piano’s lack of resonance. Both of these elements gave the performance an almost trance-like quality.”

 

Jarrett overcame the lack of volume by standing up and playing the piano very hard. He stood, sat, moaned, writhed, and pounded the piano keys.  You can hear him on the recording, the agony of the music, his effort at creating any sound at all. He sweated out what must have been an excruciating hour, and he triumphed. The Köln Concert has sold 3.5 million copies and is perhaps the most beautiful, transformative piece of music I’ve ever heard. It makes me cry to hear it, especially if I recall the courage it took for him to perform in front of a live audience on an unplayable piano with that desperate girl in the wings, wringing her hands, hoping beyond hope that he didn’t rise from the stool and walk out. Hoping nobody noticed her great failure to produce the right piano for this most important occasion.

 

Describing his performances,  Jarrett says, “Solo concerts are about the most revealing psychological self-analysis imaginable.” I’m willing to bet that’s true, but I would suggest that being confronted with a child with autism (or any serious disorder) is similarly revealing. In the same way in which Jarrett’s solo performances require him to take an enormous risk that unfolds note-for-note in front of an audience of observers—some cheering him on, even loving him, others waiting for him to make a mistake about which they can later comment—the parents of autistic children are fully exposed as they embark on the most difficult of endeavours: raising a child with autism.

 

I don’t want to draw too much on the metaphor—obviously, my son is not a piano. I am not a musical genius. But since the day my son was diagnosed, I have been having to improvise in uncertain conditions.   I’ve been doing my best, as do the parents of every autistic child I’ve met, confronting the whole situation with a defenselessness and exposure that would be taxing enough if a child’s life weren’t at stake. Contorting myself, standing up, moaning, and trying to muster a little more every day, trying to help my son do the things that most ordinary children do with an effortlessness that astonishes me.

 

I’ve performed semi-publicly, sitting uncomfortably in meetings with doctors and school officials, presenting my son’s case. I have reasoned with, explained, begged, and argued on his behalf.  I’ve stated aloud almost every year that I am not entitled to make “deals” with the education authorities or barter away his rights.  When I am not in meetings I am with him, teaching him one-to-one, hour after hour, year after year, from age 3 forward.  In turns, I have been disparaged and congratulated, ridiculed and praised. Those who told me I was wrong or misguided or pathetic or unreasonable came and went. The ones who thought I was doing well (in truth, that Nick was doing well as that was our only important measure) were kind and encouraging but also went on their way elsewhere, back “to the world”, as I’ve come to call it. They filled in their forms and annual reports, performed their audits on his language and skills, and added their paperwork to the files that tracked my efforts and Nick’s achievements.

 

We started all this seventeen years ago. Some of the people who worked with him have left their jobs, retired or died. That’s how long its been. And I’m still here with my piano, which turns out to be a far more robust instrument than anybody imagined. And it plays something very beautiful if given the right circumstances, too.

 

Every so often, I listen to the Köln concert.

 

Jarrett is quoted as saying, “I was due to go onstage soon, we’d had so many hassles, and the piano was such a terrible instrument. And I hadn’t slept anyway. So I was in almost hell—” He was then served late at a restaurant and when the food came it was terrible. He went on stage exhausted and ill-fed and had to invent a way to make things work.

 

Which he did.

 

Which I did. And I am willing to bet anybody with a child with autism reading this has done, too. In the middle of the night, when they are frightened of something ubiquitous and unavoidable (birds is one example; my friend’s daughter is scared of birds), when they can’t write a sentence or speak intelligibly or find their shoes, pen, phone, money, ticket….and they are eighteen.

 

Jarrett expected a working piano. He didn’t get it. However, the concert ended up being perfect because of the piano and all its faults and idiosyncrasies.

 

Living your life with a child like mine, though not always easy, is a transformational experience. I’ve moved from the initial shock that Nick’s brain wasn’t “neurotypical” to getting to grips with helping him develop and learn in whatever way he could, to watching him do it all himself. A long time ago, we taught him, sound for sound, word for word, how to speak. In a diary I made columns for words he said that day and words he tried to say. I had columns for words he responded to, as well. To give you some idea of where we started, my first task for “receptive language” was to teach him to respond to his own name. Every day we made sure to repeat the words said, the words he responded to, then added some more. Progress was slow, then faster as he made the necessary connections between speech and controlling his environment. If he wanted a toy, he could say it’s name. “Thomas,” he said (or a near enough approximation), and then pointed to the train as we taught him to do. He got Thomas the Tank Engine. “Gul,” he said, his word for “milk”. And he got milk.

 

We taught him how to play by videoing ourselves playing with his toys and then showing him the video. It sounds crazy, I know. But we were dealing with his brain, an unusual instrument that preferred to learn in 2-D.

 

And then, he took over. I’m no longer in charge of developing his abilities, he is. I still work with him, but I recognise that my role isn’t so much about helping his mind to develop as helping him adapt to adult life. I have come to appreciate his mind with all its unique features and unusual movements of thought.  While still “on the spectrum” and demonstrating any number of obvious traits to that effect, he is nonetheless a sound thinker with an imagination. He watches the news in several languages, including Chinese and Arabic, produces videos and comic strips, stays in touch on-line with people all over the world.

 

It’s “the world” that I am worried about, however, his transition to independence, if that is even achievable, that worries me. I am hoping that I live long enough to finish the work here, to watch him live a life of his own, as happy and fulfilled as can be reasonably expected of any person. He’s so close, you know. Autistic people vary greatly, with some being considered “low functioning” and some being considered “high functioning”. But it seems to me that there is one hell of a difference between “high functioning” and able to live an independent life.

 

I’m hoping he makes the leap. I tell myself to be brave, move forward boldly and with confidence. After all, I’ve already seen him achieve greatly despite his many challenges, and he’s not done yet.

 

About the Köln concert, Keith Jarrett said, “What happened with this piano was that I was forced to play in what was — at the time — a new way. Somehow I felt I had to bring out whatever qualities this instrument had. And that was it. My sense was, ‘I have to do this. I’m doing it. I don’t care what the f*** the piano sounds like. I’m doing it.’ And I did.”

 

Autism

Vaccines and the Spectrum of Illness

 

Last night, yet another person told me I was deluded to imagine any adverse effects on my kids after their childhood vaccinations. I hadn’t gotten two sentences into expressing my concerns before he stopped me. As though I was a tiresome burden to his superior intellect, he said, “Marti, I’m telling you!” Wagging his finger, shaking his head. He told me I was wrong, illogical, superstitious–essentially stupid.

 

 

It will be some time before I forgive him, though he is on the spectrum and I feel it my duty to try.

 

 

I make the admission up front that I may be somewhat paranoid about vaccinations. My experience prejudices me toward worry. There is an old saying in the medical profession that when you hear hoofbeats, think horses not zebras. In other words, don’t let your imagination run away with you. But what if you have experienced zebras–that wildly unlikely thing that was never supposed to happen? When you next hear those hoofbeats, to what should you attribute the sound?

 

 

Both my children were affected by vaccinations, whether the earlier baby vaccinations or the MMR. Like clockwork they developed some sort of new throat or ear infection within a week or two of their jabs. They spiked crazy temperatures requiring trips the the hospital, scaring me half to death. These were not vaccine reactions, as such, just slow declines until, at last, I ended up at the doctor’s office.

 

 

Every time it happened, the GP said I was only imaging a connection. Being a sensible woman I thought perhaps the qualified doctor knew a little more about childhood health and the relative safety of vaccinations, so I kept vaccinating my children on the schedules prescribed at the time.

 

 

It was a strange cycle of illness.  Things would go along okay and then–boom!–we’d be back to a crying child, a climbing fever. My house grew sticky with throat syrup and amoxicillin.  Calpol and Ibuprofen, hourly temperature checks, cool baths, phone calls to the doctor. What was motherhood like for me? Magical bliss between cyclones of fear while the baby I loved more than I’d known it was possible to love anything, became floppy and despondent.

 

 

Both of them were like this–the one that developed autism and the one that did not. And notice how I am not claiming the MMR caused my son’s autism. I am claiming my children were unusually ill after their vaccinations but that only one become autistic, and the change that occurred in him began long before the MMR.

 

 

Imo’s illnesses were always much more dramatic than those of Nick, my second child.  The worse time was when I was 30 weeks pregnant and she raged with a temperature that was moving skyward from 104. I paced the hospital with my big belly and my toddler daughter over my shoulder. They wanted to do a lumbar puncture but I told them not to because I knew–I’d seen before–that temperatures like this could be controlled with enough medication and that she’d be okay in about twelve hours. But this time the temperature was barely being controlled and they wanted her on an IV drip. I began to doubt myself. Perhaps she really did have meningitis. I spoon-fed her water every fifteen minutes all night long; I worried she might die.

 

 

Writing this, I can almost feel her infant body, the furnace of heat that radiated from her wet hair, her fiery chest. Her cheeks were prickly and red, her feet like ice.  She looked so solemn in the weird hospital light, calmly trusting, exhausted. She wanted me to hold her over my shoulder and walk, but they asked me not to walk her in the hall. “The other children,” the nurse said, gently. I realised all at once they’d given us a private room because they were concerned she’d infect the ward. So I paced the room, avoiding the equipment lining the walls.    It felt as though we’d been annexed from the world.

 

 

By the morning, the temperature had resolved, climbing down to 104 to 103 to 102 where it stayed for a while before disappearing altogether. I fell asleep in the chair beside her crib bed, curled around the ball of my belly, relieved that the illness had arrived and retracted as it always had, disappearing with the night. I felt triumphant and very grateful. I checked that Imo was breathing, that the baby inside me (Nick) was still moving. I slept on and off as nurses checked Imo’s temperature with an ear thermometer. I watched blearily as they acknowledged her improvement.

 

 

I wanted my husband to come and soothe me. I wanted to tell him, too, that we were safe again. The storm of her illness had resolved. We could celebrate, or at least rest.

 

 

Imo was unusually antisocial until about age four. She refused to go to toddler groups or meet new people or interact with children. The health visitor, attempting to enter the house for her three-year check, was met by a child so hysterical at the notion that a stranger was coming through the front door, that she had to retreat. I was advised to take Imo for a psychiatric evaluation.

 

 

But Imo was not autistic. In the same way she eventually shrugged off the illnesses that dogged her early years, she grew out of her social isolation, her hatred of other children, her terror of strangers. She went to nursery school. Admittedly, she started off very poorly at school, impressing none of the teachers at either the nursery or primary classes she attended. However, she showed an uncanny ability to draw so we put it down to artistic temperament.

 

 

We were right. By the time she was at senior school she was a very confident kid with tremendous gifts and social skills. She went onto to be the president of theatre club at University of Durham, then to an art college to study animation. I think she is the most socially adept, well-rounded, sunny young woman I know. Did her vaccinations have anything to do with all those illnesses?  Maybe, maybe not. They certainly didn’t cause her to become autistic. Even so, I remember that health visitor and how she looked at me with a mixture of pity and disdain. “You need a psychiatric referral right away!” she insisted. Lumbar punctures, psychiatric referrals. I ignored such advice–should I have? I believed in my children’s ability to bounce back. I believed that things would be okay.

 

 

And they were, until they weren’t. Nick deteriorated markedly from about 19 months until 36 months at which time  massive intervention helped him begin to acquire language and play skills. I spent years on the floor with him, showing him the great fun of crashing his cars “Crash!” I’d say, encouraging him to try the word. “Go!” I’d say, waiting for him to repeat me so I could blow bubbles through a wand.

 

 

I took advice, sought help, paid for consultants, and studied everything available about how to foster language and play skills in a non-verbal autistic child. There wasn’t much but this message was clear: interact with the child every waking hour…take them progressively through the steps of development they hadn’t acquired. Be gentle but tenacious. Reinforce, backward-chain, chunk everything down and teach in sequence. Little step, little step…

 

 

Do I think there is a connection between vaccinations and autism? The experts say not. As for me, I can only report what I saw: vaccinations seemed to make my kids sick, but maybe they would have been sick anyway. Of course, measles might have killed them and they didn’t get measles. Why? Because nobody got measles.  Vaccines prevented it, you see.  A case of measles would be like the zebra hooves you weren’t likely to hear. Rare, unlikely. Like autism.

 

 

Eula Biss the author of On Immunity quotes the historian Michael Willrich, saying, “Perceptions of risk–the intuitive judgement that people make about the hazards of their world–can be stubbornly resistant to the evidence of experts.”

 

 

Am I being stubborn even to relate the story of my children’s babyhoods and illnesses and the schedule of vaccines I followed, though I grew increasingly concerned? Is it impossible for me to both suspect that the vaccinations may have been involved in how frequently they were ill while simultaneously agreeing wholeheartedly that  vaccines save lives? Must I be in one camp or another? Must I deny what I saw?  Will I be imagined as part of a “movement” for writing about what my family experienced? Should I be bullied into silence?

 

I made an doctor’s appointment for my son to get a vaccine he missed during secondary school because he’d been ill when they were vaccinating…so, it isn’t that I don’t try to go along with things.

 

 

Perhaps it is simply a measured, mature view to be able to hold two opposing thoughts in tandem: that vaccines save lives; that vaccines may have been implicated in the relentless illness both my children suffered. I’m not talking about autism, though one is autistic and so that fact, among the others, must be included in the story.

 

 

 

 

Autism

The Insider’s Guide to My Celebration of Ganna

 

Five years ago, I took my son, who was then aged fourteen, to a Greek Orthodox Church, dropping him off at 11:15am and then hiding among closed Sunday shops in Reading until half an hour before the service was due to end at 1pm.

 

When I returned, I found him standing full attention in the church, listening intently as the priest blessed all sorts of things, but mostly the holy water because it turned out that today was the blessing of the holy water festival…or something I didn’t understand, not being Greek or Greek Orthodox, and having window-shopped a closed Monsoon, a closed Waterstones (and a closed Paperchase, Next, Whittards, and Thorntons) for the entirety of the service.

 

Or what I imagined was the entirety of the service. Apparently, this particular church felt a service scheduled to end at 1pm should go on for several additional hours because of the blessing of the holy water or whatever the task was. You’ll have to ask Nick why exactly as I spent most of that time reading the back of the shirt of a man in the front of me, who was wearing an orange turban and did not look like he was a Greek Orthodox, but something else that combined a number of religions including Sikhism. His t-shirt had all sorts of stuff on the back about Jesus, Sikhism, and a youtube channel I could not quite make out in the church spotlights, and he looked as displaced in society as I was.

 

I’ve had a feeling of unbelonging that began just prior to Nick’s diagnosis and is still going on today, and I felt this man’s presentation of himself, with his whacky shirt and inappropriate turban, was far more honest than the representation I chose to give in my oversized jumper and winter leggings. You couldn’t tell much about me, not with these pearl earrings, and clean boots. Not with this fashionable haircut. You would never guess I spend most days trying not to lose my mind, imagining my son’s future.

 

Everyone was very nice. They gave me a candle. There was a long procession. Once in a while an ambulance passed and we heard the siren above the choristers and prayers and chants and moments of sermon. The siren reminded there was an outside world and that, through doors provided, we might escape. But Nick didn’t want to escape. Autistic kids are supposed to have short attention spans and hate crowds and become agitated at too much stimulation. But the church was full of ornate brass thuribles with their smoking incense, crowded worshippers, gleaming saints and gargloyes and scary images, echoes and coughs and the sense of being pushed around in a throng of people. If anyone was finding the experience difficult, it was me not him.

 

Today, we are not going to the Greek Orthodox Church (I hope) but last night we did celebrate Ethiopian Christmas. Please remember, this wasn’t my idea either. I didn’t even know that Ethiopia had a particular day (January 7th) during which Christmas is celebrated through the festival they call Ganna. I thought the reason my son wanted to go play air hockey at the local bowling alley was because he’d finally decided to do something kids his age like to do. It felt to me that air hockey was a signal of some new milestone for him. I got excited—could it be that soon he’d decide to meet up with friends or have a drink at the pub or talk about career aspirations or get a driver’s license? Was air hockey the beginning of a new turn in which he began to engage in life newly neurotypical?

 

But no, air hockey was the best he could do to emulate Ethiopian Christmas. On the morning of Ganna the people dress in white, which explains why he showed up last night in his white summer trousers though it is winter. During Ganna, the people of Ethiopia play a game that is also called ganna, which involves curved sticks and a wooden ball, not unlike our hockey. That was why we had to play air hockey on January 7th, as part of another culture, not ours.

 

While there was no Ethiopian church available of us to attend (thank Christ) there was the fantastically colourful Global Cafe, a restaurant run by an Ethiopian chef named Tutu, and to which we arrived to eat wat, a tasty lentil stew, and injera, which is like bread but much worse. Nick loves it, loves all things Ethiopian, and I’d like to say we had a fabulous family dinner together except that he insisted upon listening to Ethiopian music through his earphones most of the time. So it was my husband and me on one side of the social wall, with Nick on the other.

 

Anyone looking at us would see quite a familiar picture: a middle aged couple with their newly adult son, who is happy enough to accompany them (and dressed nicely in white trousers, as it happens) but really interested in his own stuff, the music on his iPhone, the food on his plate. The couple talk together and every so often try to engage their son who is polite, but really only wants to return to his music.

 

This is normal, right? All of you out there experience the same? It only looks normal on the outside, which is how autism so often presents itself. To the observer, everything is typical and fine, even quaint. But it is this disconnect of which I am acutely aware and that I look at the way one might a massive geographical obstacle that needs traversing. I want to cross that divide. Nick will allow me to so–he never tells me to get lost.  If I want to learn Amharic (as he is) or learn all about ganna, which is his current passion, he will help me.

 

And I do this. I enter in, but am I entirely right to enter in? How much should I ask that he step into the social world of his family and peers, however dull that might seem to him? I am willing to believe anything right now–that I am unfairly critical of my son, a natural anthropologist. That I should interfere with his flights of fancy or even consider pharmacological intervention. In short, I don’t know what to do. He is fine now because he can lean upon his fully functional parents. But what happens when we become ill, then die?

 

The government seems to think there is nothing wrong with him and he needs no support at all after we’ve gone. His diagnosis–autism–holds no sway with the bodies that are meant to support those with disabilities.

 

In short, he has no disability–and remember that picture I painted? Middle-aged couple, nicely dressed son with his iPhone? Who would imagine he needed any help? No one, but only if you look from the outside and not at what is really happening within. That must be ignored–by everyone, it seems. I, myself, participate in this hiding and concealment, painting a picture of what I imagine to be a perfectly normal family. At the restaurant, in the church, wherever we are.