** I have cross-posted this from my DiamondSharp blog, as I think it worth sharing.
For the past five months, my husband and I have been on a life-changing journey. That journey has been to a diagnosis of Autism Spectrum Disorder in our five year old son. One of the upshots of that journey has been the cold realisation that the professional development about Autism Spectrum Disorders — especially the high-functioning kind — that I have received as a high school teacher, was completely inadequate. So inadequate was this PD, in fact, that it had the effect of making me THINK that I knew something about ASDs and what Asperger’s Syndrome looked like, when in actuality it had the effect of blinding me to the symptoms of ASD in my own son.
I took my son, (let’s call him Nick), to our GP towards the end of Summer. It would have been January. Our problem was that Nick, who had only rarely slept through the night since he was born five years before, was now waking about three times every night and would call for us. This was rugged and the sleep the family was getting was more intermittent and interrupted than what we got when he was nine months old.
What’s more, he was becoming more and more anxious and inflexible in his thinking. Any transition at all from one activity or location to another seemed to trigger a tantrum. The breaking point was when, during an argument with me, he threatened to kill himself. He even said how he would do it – by running in front of a car at a nearby main road. That floored me. This was not okay in any child, but not at all acceptable in a child who had just turned five.
So off to the GP we went.
With referral in hand, we attended a child psychologist and a paediatrician. They asked me lots of questions. They observed Nick in formal and informal ways. My husband and I filled in lots of questionnaires on Nick’s development and behaviour.
And then, the thunderbolt — the psychologist offered her opinion that Nick may be suffering from anxiety and a sleep disorder because life was getting too much for him and felt chaotic in his experience. Why? Because he may have an Autism Spectrum Disorder.
When we saw the paediatrician she also thought there may be something there worth investigating. So we went to a Speech Pathologist who specialises in ASD. I thought at this stage that it would be realised that it was a mistake – my son was quirky, maybe a little intense in his interests, and very uneven in his development, to be sure, but his language development? It was fine, I thought. Surely a child who can explain the difference between a Stegosaurus and a Kentrosaurus by the time he is three cannot be said to have problems communicating.
Wrong. A child can have a vast vocabulary, but not know the ‘rules’ of conversation and communal play.
A visit to an Occupational Therapist also exposed a host of problems in sensory processing, motor organisation and perception. Issues in vestibular and proprioceptive processing are apparently very common in children with ASD – but did we know, even though one of us is an educator? No, we did not. (Find a resource on sensory-motor issues in ASD here.)
To make matters worse, as we were working through the hours and hours of appointments and screening and testing and filling in questionnaires, it came back to me that this was not the first time professionals had raised concerns about my son’s development. When he was about 2 and a half, the room leader in the childcare centre he attended asked for several meetings with me during which she showed me footage of him playing alone in a remote corner of the outdoor play area and flapping his hands as he muttered to himself. ‘So what?’ I said, ‘That’s what he does when he is excited.’ Concerns were raised again and again and eventually we were asked to see a paediatrician. The first paediatrician we saw said there was nothing to worry about and that his not engaging in cooperative play was still not to be expected in every child his age and that it was probably temperament.
When some of the same concerns, and some different ones, were raised by a different room leader when he was 3, we thought we already had an answer for her: we had seen a paediatrician who had said nothing was amiss. We wanted our son to be allowed to be his own person, even if that was quirky and odd, and we were leery of mere human variation being turned into pathology.
But it turns out that life is more complicated than slogans about not ‘labelling’ children; we will have to learn to walk the line between acknowledging and treating our son’s Autism, while communicating to him that we love him for being his own person. It just that he runs on a slightly different wave length or frequency to most of us and it is up to us to learn how to tune in.
The thing is – I felt an enormous disappointment in myself. I was an educator. Surely, I should have picked up the signs of ASD.
The unfortunate conclusion I came to, however, was that the PD I had received several years ago about ASDs had had the effect of ‘inoculating’ me against any real understanding of what ASD means and how it can affect a child’s experience of school and learning on so many levels. I thought I ‘knew what I was looking for’ – yet the information I was given applies only to those who are closer to ‘classic autism’ than the high-functioning individuals we are likely to come across in mainstream schools. Even if some of what was said applies to kids with Asperger’s Syndrome, we were really only told about one version or type of presentation.
So – here are some of the messages I received from Professional Development for teachers that ended up making it less likely that I would pick up on my son’s ASD. I share them here in the hope that other educators will see them and become willing to listen if a parent says their child has ASD, but they don’t seem to match the description we have been given in PD.
- WHAT WE WERE TOLD: You can pick the Asperger’s/High Functioning ASD kid in the class: they are the ones who have no friends and no interest in interacting with others.
This one would have to be the most profoundly inaccurate piece of information I have been given in PD about ASD. SOME children on the spectrum fit this description, but a whole lot of others do not. Children with High Functioning Autism can blend in with typical children and not seem to stand out – their language acquisition may be normal or even superior to their neurotypical peers. They may have friends and they may initiate conversations. The smarter ones (and, it seems, the girls) learn to imitate the behaviour of their neurotypical peers, even if they don’t understand the social ‘rules’ that underwrite it.
It’s only when you look closer — and know what you are looking for — that the problems in social communication become apparent. There is ‘communication’ but there is also the ‘social’ aspect of communication. This includes little things like taking turns in conversation, inquiring after and showing interest in the concerns and point of view of others, and sharing ‘air time’ with others. It means following the topic of a group conversation – and not just interrupting with an observation or question that is off-topic and only of interest to you. It means being able to negotiate conversation with others – and being able to do it with more than one person at a time and not only with adults, who shape their attention to accommodate a kid.
Among children, the social use of language includes the joint creation of imaginary play and being able to negotiate imagined scenarios with others – not just insist on one’s own world and one’s own way. It also means being able to sense when the conversation has gone awry or there has been a misunderstanding – and ‘repairing’ the conversation with a variety of strategies that become more sophisticated as a person matures. In other words – joint attention and ‘give and take’ or reciprocity are the hallmarks of social communication. Kids do this most commonly in shared narrative scenarios that comprise their imaginative, communal play.
Asperger’s kids, like my son, can be quite capable of striking up a conversation with an adult or another child. But they may run aground when it comes to answering questions from the other, or negotiating the many interactions that occur in group play amongst a few or several peers. Nick has a tendency to ‘tune out’ during mat time at kindergarten, and will prefer to play his games with one or two others, electing to go off on his own once the other children decide to go onto another game not of his choosing.
This stuff can be subtle, but I know I fell into the mistake common to educators – I thought that because my son has friends and chooses to interact, he could not possibly be ‘on the spectrum
2. WHAT WE WERE TOLD: Children on the Autism Spectrum have no understanding of the emotions of others and hence, no empathy.
Again, this is one that educators are told to look out for. It has the negative effect of making ASD kids sound a bit sociopathic and is a crude over-simplification to boot. Of course, some children will present with these symptoms – and they may in fact be on the Autism Spectrum. It’s quite possible, however, that they have another, different problem. By the same token, some ASD kids can be capable of recognising some emotions in others and can show quite a strong desire to be kind once they do grasp another’s difficulty.
It’s all a matter of degree. While neurotypical people are attuned to recognise hundreds of subtle signs of another’s thoughts and emotions, ASD people may have the ‘inner dictionary’ of only a few of the most obvious signs of others’ cognitive or emotional state. My son, for example, told me recently that he knew I was not cross because I was not ‘wearing’ my ‘cross face’. On the other hand, he can be quite exasperating when he seems not to recognise increasing levels of annoyance at some behaviour of his and only seems to register anger when my voice is raised. He then shows complete surprise. He does not register the earlier, more subtle signs that whatever he is doing is not okay. Now that we have a diagnosis, I am hoping to get some parenting training on how to work around this!
Some ASD children need to be taught how to ‘read’ faces explicitly, while others are already able to ‘read’ say, the six most obvious signs (happiness = laughing; sadness = crying etc.), but are clueless with the more subtle cues of another’s feelings. Also, once an emotion has been explained and understood, many ASD kids are capable of responding appropriately – it just takes them a while to get there and they have to think about it, rather than coming to the insight spontaneously.
3. WHAT WE WERE TOLD: ASD kids have no ‘theory of mind’.
This is another one about degree – it is not as absolute as NO theory of mind. Some Autism sufferers really do have very little insight into the separate subjectivities of others. But some high-functioning individuals have some insight – just not the usual quotient. It may turn up in not realising that not everyone else is as enraptured about dinosaurs/Lego/Star-Wars/trains as they. ASD sufferers can talk and talk and talk about their special topics of interest and have little idea that their interlocutor is bored rigid. However, read kindly, this IS an attempt to connect, it is just based on some faulty reasoning that everyone’s mind is like theirs – – equally enthused about Dinosaurs/Lego/Star-Wars/Trains etc.
This also goes back to # 2 about emotions – it is impaired understanding, but, in many individuals, an understanding that can be reached through another route, through explicit teaching and conversation strategies. In the same way that I can learn about another culture’s food and habits, even if I never visit that culture, a person with ASD can learn about some of the habits of others’ minds, like another culture, even if they themselves do not ‘live there’.
This is why it is called an ‘Autism Spectrum’ – there are as many variations along the gradient of being affected as there are kids who are diagnosed. Autism is a pattern of difficulties that psychologists, paediatricians, and speech pathologists, have worked out form a cluster of behaviours or symptoms to form a syndrome. It is caused by a variation in the neurology or ‘wiring’ of the brain. However, each child (or adult) diagnosed will present with their own ‘riff’ on the recognised symptoms – some will have no language, some are chatterboxes; some are academically gifted, some struggle with literacy and numeracy; some are aloof and disconnected, others want to connect but merely struggle with the ‘how’.
Professional Development about ASD for teachers needs to be pitched in such a way that we do not come away with a schematic, ‘cookie-cutter’ idea of ASD in our minds, or a false confidence that we ‘know what we are looking for’. Presenting these simplified views of the symptoms of ASD as the whole story does everyone a disservice. One of the side-effects of this, too, has been the attitude I have encountered from some educators as I prepare Nick for Primary School – that Asperger’s is ‘really, just a quirk’ and that it presents no real challenges to a child’s learning. The lesser-known effects on cognition, coordination and sensory processing are, in fact, significant barriers to effective learning for many an ASD kid.
But more on that another day …