I have made an (apparently) controversial choice regarding James’ transition to school this September. Despite attempts by various professionals to dissuade me, I am determined that James should go to a special school rather than our local mainstream primary.
The difficult thing about Autism is that two children with a diagnosis of ASD might have very different needs when it comes to education. However, approximately 70% of UK school age children with ASD do attend mainstream school, so I am seen to be going against the grain with my decision- especially since most children that attend a special school do not do so from their reception year. But it is not a choice I have made lightly; in fact, up until as recently as this week, I have agonised over it.
Having said this, hearing recent stories in the press that children with Autism are being denied education due a high incidence of both formal and informal (i.e. illegal) exclusions, I do feel somewhat vindicated.. and moreover, convinced that I am making the right choice.
Since autism is a spectrum disorder, meaning that individuals with ASD can vary wildly in terms of their linguistic and intellectual capability, I should explain where James is at the age of four. He is best described as ‘moderately’ autistic, but he is by no means unintelligent. This has been shown, for example, in the fact that he can count- extremely well. The last time I checked he was counting far beyond 100, and more impressively, he actually recognises the numbers in their written form. He can also name shapes, letters and colours, and his memory and spatial awareness are excellent. His speech and language therapist has made it clear to me that she believes James will be the most able child in the class I am intending for him to join.
When I am asked if James is verbal, however, I find that difficult to answer. He didn’t really speak at all until a month or so after his brother was born, at nearly two and a half- and I’m convinced this was partly because he realised he had to compete for our attention. He started to label things: Car. House. Tree. Naturally, we were overjoyed and relieved. What was untypical about James’ speech development though was that he was not naming the objects to draw our attention to them; rather, it was for the fun of hearing the words come out of his mouth. He’d repeat the same word, over and over. After a while, we realised he wanted to hear us repeat the word back to him. Aged four, this game is still going strong.
James has gone beyond individual words now, but he struggles to use language to actually communicate. What he can do is memorise large sections of dialogue from his favourite TV programmes- say, Mr Tumble- and parrot them word perfectly at random times of the day. Naturally, because I have been forced to endure each Mr Tumble episode approximately three thousand times, I instantly recognise where this ream of speech has originated from, but to those not in the know, his command of the English language can sound very advanced for a child of his age. It is only when you ask James a question or attempt to engage him in conversation that it becomes apparent that his speaking ability is closer to that of a child of two.
James’ understanding of language is also very delayed, although it can be tricky to judge what he cannot understand and what he is merely ‘tuning out.’ But to give an indication, he has only recently reached the stage where he can understand a basic instruction like ‘shoes off’. And it has to be that simple. If I asked him ‘go upstairs and find your coat’- that’s too complex. Similarly, ‘did you have fun at Springboard today?’ will be met with a blank look.
I’ve spoken before about James’- shall we say- ‘single minded’ approach to life. This is never more evident than when it comes to his attention span for adult-led activities. This is very dependent on how motivating the activity is for James, and if it isn’t, the chances of getting him to sit still for any period are slim. He can also become extremely distressed if things do not go quite the way he is expecting them to. For example, on a recent day trip out with nursery, the children were taken out of the building through a different door than usual. Cue a ‘meltdown’- i.e. screaming, crying and throwing himself around on the floor. Because he lacks the social imagination to predict what is going to happen next, even the immediate future is a frighteningly uncertain concept. His sense of security therefore relies on things happening in exactly the same sequence as they have before. Any divergence from this pulls the rug from under him and induces panic.
As for his behaviour, I talked at length about James violent episodes in my last entry; suffice to say that his lack of danger awareness and empathy, combined with feeling regularly overwhelmed and frustrated in the presence of unfamiliar people can often lead to injurious consequences.
With all of this in mind, I think it’s fair to say that James’ transition to school will not be an easy ride. Current thinking however, is that ‘inclusion’ is best for the child. By attending mainstream school, so I’m advised, James will mix with typical children and their social skills will ‘rub off’ on him (they haven’t done so far, but ok then).
This is an idea that sounds great in theory, and I’m certainly not trying to suggest that all ASD children should be educated outside the mainstream system. But looking at research recently undertaken by Ambitious About Autism, the inclusion ideal just doesn’t seem to be working all that well. There is a worryingly high incidence of children with Autism being excluded from school, and of parents withdrawing their children from school to be home educated because their needs are simply not being met. And the distressing part for parents like me is that these problems are arising due to a lack of understanding of Autism and its implications for the classroom. How can parents be expected to have faith in ‘inclusion’ if this is the case?
I’d love to believe that these were just extreme cases, but sadly my own experience bears witness to it. Many moons ago, I trained as a primary school teacher. (I didn’t pursue teaching because frankly, the sheer pressure and ridiculous hours the job involves, for a relatively low salary, made me run a mile.) Considering that autism affects 1 in every 100 children and our local school has an intake of nearly 100 pupils per year, chances are there will be at least one child with ASD in every year group. Yet I cannot recall any more than the briefest coverage of SEN during my course, let alone any specific training about Autism. How can this possibly be right? And more to the point, how can this ever lead to inclusion?
When I went to look around the special school I am hoping to send James to, my gut instinct told me that it was the place he would be happiest.
Each of the six children in the class, supported by the class teacher and two teaching assistants, followed a curriculum tailored around them, relevant to their strengths and interests. Displayed around the classroom were visual timetables indicating the order of events for that day; outside was a beautiful outside play area full or sensory toys. Additionally, there was a separate sensory room for quiet time. The staff were all accustomed to dealing with challenging behaviour, and as you’d expect, had an in-depth understanding of autism. The only place I could liken it to was James’ wonderful special needs pre-school, Springboard Opportunity Group, a charitable organisation that we are incredibly fortunate to have on our doorstep (and which I dread him having to leave).
Interestingly as I looked around the school, I noticed that in the later years the class sizes got bigger. It was explained to me that not many children start off in special school, but transfer there at the point where they are no longer coping in mainstream. That to me speaks volumes. These children hadn’t transferred because things were going well. Things had had to hit rock bottom, as had, undoubtedly, their confidence, before they’d had to go through the upheaval of moving to a new school.
Yes, by sending James to that school you could argue I am denying him the chance to mix with typically developing children, but this is not a perfect world. Perhaps if mainstream schools actually did more than pay lip service to the inclusion of ASD pupils; if all teachers were trained to cater to the needs of children with autism; if more schools offered ‘school within a school’ autism units to potentially offer the best of both worlds, then I might be willing to let James give mainstream school a try. But as it is, I have to weigh up the pros and cons, the pros of special school being that he’ll receive a relevant education designed completely around his needs, and crucially, he’ll be accepted as he is. More than anything do I want my son to have a sense that he belongs and not suffer the crushing confidence blow of realising that he is the ‘problem child’.
So, controversy be damned. I’ve heard far too many parents dispairingly lamenting the unwillingness of mainstream schools to listen, to take a chance on my little boy’s happiness or his education… I’m sticking to my guns on this one.
psst..The Brilliance in Blogging (BIB) awards 2015 are currently in the nomination phase and I would be super, super grateful if you lovely people could nominate me in the Fresh Voices category.
It only takes a couple of minutes to fill out the nomination form which can be found here. Thank you!