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Dragonfly Girl


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.”


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: 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.




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?




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.”



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.






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.


Blogs On Dogs

Dogs, Cats, and Descartes


I went to a lecture during which photographs of dogs and cats were presented on a screen and students were asked to state what emotion the animal was showing. It was easy enough with the snarling dog or the cat, ears back and fur standing on end, arching it’s back in the presence of a Rottweiler. Far more speculative were those in which subtle emotions–thoughtfulness, worry–were brought into possibility. Photographs of animals are deceptive as an animal’s face may coincidentally assume an expression we associate with human emotion and we, as masterful readers of human emotion, then impute our species-specific ideas onto the animal in question.


Anthropomorphic guesswork is fun. It’s what makes us spend hours laughing at photographs of cute puppies on the internet or watching (as I do) William Braden’s ingenious youtube channel, HenriLeChatNoir, during which we listen to the existential reflections attributed to Henri the cat, whose indifferent expressions are paired with such statements as, “None of the (Halloween) costumes are truly scary. No one dresses as crippling self-doubt.”


It turns out, however, that among the great array of people studying animals, a group that includes psychologists, neurologists, behaviourists, ethologists and zoologists for a start, the question of animals and emotions is greatly disputed. During the presentation we saw a clip from Animal Planet about a cat that adopts a clutch of newly hatched ducklings the very day she gives birth to her own kittens.


The story is remarkable because one would have expected the cat to kill and eat the ducklings, which is exactly what might have happened if her kittens had been old enough to consume solid food. Instead, the oxytocin surge experienced by all mammals upon giving birth was timed within this particular mother cat so that she extended her maternal drive to the ducklings and reared them as her own. The lesson for us students was that the cat, under the influence of oxytocin, showed specific behavioural patterns far outside what we normally attribute to this predatory species. But there were no emotions, as we humans understand emotion, behind its behaviour.


Oxytocin is huge part of all mammals’ lives, including humans. It has been demonstrated to reduce fight/flight behaviour, reduce anti-social behaviour , counteract the stress hormone cortisol , and predict bonding behaviour with young. It is also the thing that makes sex so important among human couples, as both men and women experience oxytocin surges that facilitate bonding during and after making love.


When dog ethologists wish to strip away the possibility of dogs having any real emotions they may go the route of Ray Coppinger whose 2001 book argues that what we assume to be emotions in dogs are genetically programmed motor reflexes or biologically-drive hormone surges. He tells a story about his dog, Lina, who gave birth to a puppy in a field and returned to her nest in the barn to deliver the rest of the litter, leaving the puppy alone and calling in distress. Even though the puppy was calling for her and would shortly die, Lina had not yet experienced the hormonal surge that follows birth, so did not feel the need to retrieve her pup (though Ray did).


He also tells the story about another dog, Tilly, who made no effort to attend to her puppy when it made a similar distress call at a few weeks old. Were Ray’s dogs heartless mothers? He argues that the retrieval motor pattern switches on following birth (but not during it) and switches off in the mother dog at around day fourteen of her pups’ lives. Pups can cry all they want outside of these times, but a mother dog doesn’t feel anything. She takes orders from her hormones, not her heart.


“Scientists are sometimes accused of not being aware that animals have emotions or can think. On the other hand, scientists warn people that they should not be anthropomorphic, giving animals human characters,” writes Coppinger, who does not believe a dog has “a mind”, but a kind of neurological control system preserving its life and whatever system will push its genes into the next generation.


So, what are we pet owners to make of this? Do we believe that our pets don’t care about us, but are only showing biologically driven responses to our care-giving? Do they not care about their own young, have absolutely no feelings about them at all, but are subject to whatever hormones are at play?


Scientists seem determined to shame us for imputing human-grade emotions on animals. It should make us all uncomfortable, however, to realize that many of the same arguments used by scientists (and farmers) to prevent us from having too much empathy for animals are similar to those advanced years ago about human children. Until late last century the same scientists that would have laughed at those of us who won’t eat animals (because animals have feelings) would have laughed at us for assuming human babies had feelings–even physical sensations–which is why operations were performed without anaesthesia on human infants until the late 1970’s.


Can we compare our human rationale for such barbarism toward our own infants to whatever is behind the thinking of stressed mother hamsters who eat their perfectly healthy newborns in an act of filial cannibalism? Probably not, as the hamster mother may not truly think about what she is doing as she is unlikely to have as developed a mind as we do. However, the fact that we would operate on infants without anaesthetic creates a problem for us–how can we claim to be more disposed to a cohesive way of thinking, believing, feeling and acting if in our history we have regularly cut open babies without giving them anaesthetic? Indeed, we might conclude from everything we do to one another and to the species and environment around us that our minds are clouded, our influences primitive.


The divisions insisted upon by scientists seem arbitrary. We know that the presence of noradrenaline in our brains is part of what makes you and me (as well as foxes and rabbits) feel anxious. We also know that a glut of glucocortisoids is a marker for when we feel depressed. I may be depressed because I am lonely–the same reason the dog left on its own for fourteen hours daily feels depressed. The dog and I may even share the presence of corticosteroids in our brains. But according to the scientists, we cannot compare our feelings. I have a “mind” but the dog does not.


It is easy to dismiss the emotional lives of animals because their range of display is not an exact match for our own and because it means those who eat meat can feel less guilty about consuming them as food. However, before we decide that animals’ emotional lives are absent, or so profoundly reduced that only silly people would compare them to that of humans, it’s worth thinking about how much of our own behaviour is governed by hormones.


I admit to having had no interest in babies before I gave birth to my daughter. At nine months pregnant, I looked at others’ newborns and felt nothing whatsoever, just as I have no interest in babies now that my own children are grown. Nonetheless, I gave birth, fell in love with my daughter, and have adored both my children ever since. Did the release of maternal hormones following my own children’s births give a temporary rise to patterns of maternal care until more complex social bonds could be established between us? Or do I just love my children? Or does it matter? We are separating out emotions from the presence of certain neurochemicals as though these things can be separated–is that wise?


The neuroscientist and author, Antonio Demasio, explains in his 2006 book, Descartes Error, that “Nature appears to have built the apparatus of rationality not just on top of the apparatus of biological regulation, but also from it and with it.” Descartes flawed legacy to us was in his argument that the mind and body are somehow separate, and that our minds drive our bodily behaviour.


Is the insistence of a separation between true emotions and the neurological processes governing them an analogous error to that of Descartes? Is it correct to imagine that neurotransmitters and hormones that influence the behaviour of animals are separate in kind from the emotions that govern human behaviour? After all, the brains of all mammals are remarkably similar in structure.


Damasio is not writing about dogs when he says, “Brains can have many intervening steps in the circuits mediating between stimulus and response, and still have no mind, if they do not meet an essential condition: the ability to display images internally and to order those images in a process called thought.” However, some might think this is a good summation of why a mother dog appears to love her young, but is only following innate motor patterns. I’m not going to take up the argument, but I will say that even if we conclude that the mother dog’s behaviour toward her pups was entirely instinctive and without any cognitive thinking, we cannot necessarily conclude that dogs have no “mind.” The logical extension of the observed behaviour in the mother dog (not picking up her puppy) does not explain everything about a dog’s “mind” any more than the influence of oxytocin on my behaviour as a young mother explains everything about my mind. It’s a little bit of observational data, not a conclusion in itself. And nobody ever tested me out with a duckling.




Ducks & Hopelessness

Across the street is a neighbour whose daughter has grown from mindless swearing and hanging out in cars with her boyfriends to having her own children, who she treats carelessly, or worse.  Even so, unless this young woman is verbally abusing or slamming car doors in the face of one of her young children, I try to be friendly.


The neighbour keeps ducks, or used to. She’s had other pets, too. Dogs that never were walked, fish that swam briefly in cloudy water. Recently, the ducks were waddling down the road and she came out and gave them that I am exasperated with you ducks look that she has honed and perfected. The same look she used to give the barking dogs that never left their tiny garden.


I watched the ducks lumbering down the road and the neighbour saw me watching and said, “Why do they keep getting out?”


I wished she asked me why her grandchildren are withdrawn or distracted or whiney or ill-behaved because I could have told her it was probably down to the humiliation and shame experienced regularly at the hands of her dingbat daughter, but instead it was about ducks. Why do they keep getting out?


I told her wings was the first clue. A place to swim was another.


She said, “What do I do?”


She is worried about being an incompetent duck owner. No, that isn’t it. She believes her efforts with the unmanageable ducks are heroic. Meanwhile, her grandchildren are shouted at publicly and, I imagine, experiencing worse behind closed doors. But I can’t discuss this with her. If I so much as give the violent daughter a glance she tells me to mind my own f*ing business.


So, I thought about how many difficulties I have faced, or watched in silence unable to change a thing, and gave the only answer that made any sense.


“Follow them,” I said.