You couldn’t make this stuff up. My son and I are not alone in having had a most arduous time of things over the last academic year – in which, not only has the Local Authority failed to find my son a school place, it has also failed to provide appropriate interim tuition until 9 months in to the process. Before we could get this, we had a most unpleasant experience in the form of a mainstream tutor being sent to us, who not only did not understand Autism, but was an hysteric to boot. Following her dismissal and that of the babysitter who colluded with her in making and sharing footage of my son (a big legal no-no), neither the Local Authority nor the tuition company acted satisfactorily when I complained. In the end, the special needs tutors we now have are perfect, but so much damage has been done i) by excluding my son from the education system as a whole and ii) by magnifying his pre-existing anxiety about learning by sending a mainstream curriculum Nazi, whose deportment negatively affected the whole household.
Over the past year, it is hard to say what has shocked me the most: the LA’s failure to provide a child with his legal right; the laissez-faire attitude of the schools, the case worker and his superiors, of the Education and Children’s Rights Executive; of the social services representative and, notably, of the Press. The latter has had more to do with over-abundance of case studies in this ‘national scandal’ (according to the Ofsted chairperson earlier this year) than with lack of interest, but I have wondered whether a cap has been imposed on the amount of reportage, lest it trigger an awareness of the need to change the system which, it is abundantly clear to me, is broken.
It has been an enormous shock to find that a child diagnosed with ASD seems to be confronted with a Catch-22 situation: either he is too clever for ‘special’ schools, who understand about the underlying anxiety in children with Autism; or he is too naughty for those schools (mainstream and specialised) capable of pushing him academically. I have learned, over the past year, that Autism Spectrum Disorder is a broad diagnosis, encompassing such features as Oppositional Defiance Disorder, Attention Deficit Hyperactivity Disorder, and more – notably Pathological Demand Avoidance; its breadth means that my son’s condition is far more nuanced than are the criteria used by schools when deciding whether they can meet his educational needs.
It was therefore with delight that, after 9 months or so of soul-destroying pursuit and revelation, a school seemingly able to meet my son’s needs approached us in May 2019. It was indeed partly due to the Catch-22 criteria used by the wider educational system and partly due to the resulting abundance of children with Autism Spectrum Conditions without schools to go to that a new unit has been built, which seems to be the perfect solution to our difficulties.
First of all, I was met with bureaucratic delay when the school made Daniel the offer of a place for September. The case worker had by now re-approached several schools, predominantly in Hounslow, which is both out-of-borough and an arduous journey, and he told me that no decision could be made by the Funding Team until feedback had been received from all of the schools that he had approached. I know what they were getting at: they would rather that a state-maintained school offer Daniel a place than an independent (therefore costly) school offer him a place. However, I made my preference clear and, helped by one of the tutors who gave me the contact details for the Head of Education for Surrey, I emailed this person and the local MP expressing my concern that such a delay might forestall my son’s ability to accept this school’s offer of a place. Thankfully, this helped to nudge a few people, and the case worker was given clearance to raise my son’s name and the question of funding for this school at the last Funding meeting, on June 25th.
We waited to hear the result. None came and then, on July 3rd (yesterday) an email arrived from the advocates, who are working on my son’s case (at a financial cost to my mother and I), to say that the school has failed to meet the Independent School Standards criteria for registration, and therefore cannot offer any places to any children.
This came, initially, as a blow; but then I thought about it: they aren’t going to build a new school in their portfolio and then neglect to get it registered. It isn’t possible for it to be registered now because it doesn’t meet the ISS. Yet. I’m going to wait. The good news is that the Local Authority has now named it as the school for my son; therefore, what are a few more weeks in an already protracted process when the end result could be so good?
It is yet another waiting game; but I feel that my decision to do this is right. The tutors are prepared – subject to conversation with their seniors – to continue with Daniel up until and including the transition to a school. This is great news; he likes and trusts them, and this is a huge step when all of the shenanigans of the past year are taken into account.
While I wait, I need to try and recover some of my costs from the Local Authority. This will also be a protracted process, I dare say; but I need to make the effort and, to enable me to do so, I continue my commitment to physical fitness.
Being the parent of a child with special needs means that you have to fight for everything. You have to stay ‘match-fit’ to do this; this is what I aim to do, on a daily basis, and it pays dividends in terms of physical, emotional and mental health. In this, I am tremendously fortunate; I realise that not many people are able to do what I do, due to circumstances that are different to my own.
ASD: on being a special-needs single parent 