Catchy title, I know!
And so it was that I found myself on the reflective side of a two-way mirror. And not just metaphorically. I wasn’t particularly concerned that I might be being observed. The woman on the other side of the mirror had more interesting tasks at hand, like arranging the literature and opening the jaffa cakes.
The rest of us – parents, an aunt, a sister, a signer and a support worker – were workshopping in the assessment room at the Elizabeth Newson Centre; sharing ideas, experiences and strategies for living with, working with, supporting and caring for children and young adults newly diagnosed with PDA (Pathological Demand Avoidance syndrome).
A week or so before that I was one of the 6% of parents and foster carers who attended the 100-delegate NAS (National Autistic Society) conference on SPD (Sensory Processing Disorder) at the Queen’s Hotel. (You know it’s going to be a good ‘do’ when you’re greeted at the revolving door by a finely tailed concierge tipping his top hat to you as you approach from the red-carpeted street.) Were I a SENCo (special educational needs co-ordinator) or a psychiatrist or some such thing, my attendance at these events would be portfolio’d as CPD – Continuing Professional Development. As an *electively* home educating Mum of a six year old boy who received his diagnoses of ASD (Autism Spectrum Disorder) at 4 years old, SPD at 5 and now PDA at 6 – honestly – I’m just enjoying having days out! I’m trying not to speculate too seriously on the possibility of a fourth 3-letter diagnostic acronym arriving, gift-wrapped in a reading list, on his 7th birthday. But if we are aiming for a personalised, anagrammatized, twelve letter umbrella term, we’re going to need some more vowels.
*Electively* isn’t quite how we came to be home edding. That’s a slightly tangential story – the outcome of which was predictable months before home-school relations deteriorated to this.
[In 1999] Newson… thought of PDA as a specific disorder that, along with other disorders including autism and Asperger’s syndrome, makes up the ‘family’ of disorders known as pervasive developmental disorders… Newson… pointed out that there may be some children who fall between these ‘typical clusters’ [of diagnostic features] (i.e. they share characteristics of… syndromes).
Christie, P. et al. (2012)
It took 50 years for Asperger’s eponymously named “disorder” to appear in the DSM (Diagnostic and Statistical Manual of Mental Disorders). It appeared in the fourth edition, published in 1994. (It was listed as a syndrome a year earlier in the ICD-10 (International Classification of Diseases, 10th edition) published by the WHO (World Health Organization)). Just nineteen years and one edition later, Asperger’s disorder disappeared from the DSM-5 as it was collapsed, along with other previously differentiated developmental disorders, under the all encompassing label of ASD. If PDA, as a diagnostic sub-category, follows a similar trajectory to widespread recognition as Asperger’s syndrome then we can expect to see NHS diagnoses reaching our children for a brief period of twenty or so years, beginning at some point in the 2030s. More likely the 2040s actually, if current waiting lists to be assessed by paediatricians and psychologists are anything to go by.
So, where exactly am I going with all this? Well, to two places in the immediate future – the British Library in mid-January and a Tribunal hearing in early Spring. The CPD jaunt to London later this month is to hear Tony Attwood, whose specialist subject is Asperger’s syndrome, and Adam Feinstein, a writer who was financed by a very rich Dame to travel the world researching the history of autism (nice work if you can get it!) discussing What Works in Autism. What does work in autism is a very much shorter list than what doesn’t. The tribunal hearing, to be presided over by a judge and panel, will be the culmination of an ongoing
battle negotiation with our LA (local authority) over what constitutes an “efficient and suitable” education for our son. In a nutshell, the argument comes down to the interpretation and implementation of a single sentence in section 8:14 of the SENCoP (Special Educational Needs Code of Practice; 2001) which states that:
“LAs should, of course, arrange for the provision specified in a child’s statement to be [i] made in a cost-effective manner, but that provision [ii] must be consistent with the child’s assessed needs.”
The child’s statement. I’ll come to that in a minute.The LA’s priority is cost and is steadfastly their only interpretation of the word “efficient”. Not even cost-effectiveness actually, since they give little, if any, consideration to long-term projected outcomes. The LA is concerned with what it costs right now and whether or not it’s going to eat into any or all of the stationary, individual expenses or buffet allowances. Vol au vent, anyone?
Any ‘savings’ are, of course, imaginary. The price of the very necessary therapeutic educational provision which LAs fail to deliver to pre-schoolers and primary aged children with neurological ‘hidden’ disabilities is paid for at much greater cost by the teenagers with BESD (behavioural, emotional and social difficulties) being placed in last resort PRUs (pupil referral/re-integration units) because the system and thus the children are broken. “Early intervention” is a favourite buzz-phrase amongst practitioners across both clinical and educational services but it remains something that is only ever talked about. It’s a bullshit-phrase that – in the ‘professional’ sphere – has zero tangibility in the lives of these kids.
Interestingly, PRU education is classed as “education otherwise”. Our little boy began his “education otherwise” at 5 years old because we made the conscious decision to pull him out of a system which was already failing him – quite spectacularly. The standard LA model is to either actively push the child or passively wait for the child to have a full mental breakdown to ‘prove’ that they need extra help and to then procrastinate at length over how, or even if, to pick up the pieces. And then to argue about who’s responsibility it is to pay for it. You don’t need to have picked up any pop-psychology from Frasier in the small hours to predict how that’s going to turn out. And trust me, it’s a lot less funny.
I first learned of the existence of Statements of special educational needs when Boy was still 2 years old. I was already panicking at the prospect of him entering a new learning environment when he turned 3. I knew there was absolutely no way he was going to cope with nursery. But already I was thinking ahead to statutory school age at 5 and feeling physically sick at how much worse that would be if I didn’t start preparing him for it now. The HV (health visitor) and CNN (community nursery nurse) saw exactly what I could see and chimed noddingly in unison, “He’s going to need a statement.” What I couldn’t appreciate at the time was the horizonless gulf between him needing one and getting one.
The Consultant Paediatrician referred us to the CDPT (Child Development Psychology Team), an NHS SaLT (Speech and Language Therapist) and the EYSEN (Early Years Special Educational Needs) Panel at the LA. Meanwhile, the private day nursery Boy was tentatively attending, in very short, well spaced out sessions, referred him to their in-house EP (Educational Psychologist). Boy’s non-attendance at the local mainstream nursery, because he would be subjected to that only over my dead body, precluded him from receiving any help from the SSPSCSEN (Support Service for Pre School Children with Special Educational Needs) but, in failing to meet their support criteria on a technicality, a referral could then be made to the LA’s own EPS (Educational Psychology Service) who, if they felt it necessary, could then refer Boy back to the EYSEN panel, by which time, of course, he’d be too old to qualify for consideration. And anyway, the SENCo, who’d never even met Boy, still hadn’t yet composed the waste of ink which was to constitute his first IEP (Individual Educational Plan). Other professionals who have contributed something or nothing along the way, to date, and who have ranged from arriving fashionably late to – frankly – taking the piss, have included the questionably named Inclusion Service, two LIOs (Local Inclusion Officers), neither of whom are connected in any way to the aforementioned Inclusion Service, another NHS paediatrician, another NHS SaLT, an NHS dietician, a County Medical Officer, the Specialist School Nurse – acting as a mediator between us and CAMHS (Children and Adolescent Mental Health Services) because Boy didn’t qualify for any direct CAMHS input – (the self-harming episode being only stereotypically incidental rather than consciously intentional after all), another LA EP, an LA pupil caseworker, a senior LA pupil caseworker, the EWO (Educational Welfare Officer) at the MAT (Multi Agency Team) and the LA Assessment Checking Panel. Though not necessarily in that order. And the most recent communication we’ve received from the LA has the most senior EP, with whom we’ve never even met, CC’d in via email.
“He won’t get a statement because he hasn’t got a diagnosis.” “The waiting list to see the clinical psychologist is currently running at 7 months.” “He’s not physically harming any of the other children or staff members therefore he’s simply not a priority.” “He doesn’t look autistic.” “He wouldn’t be so anxious if you didn’t project your own anxieties onto him.” “Being on the SEN register grants him no special status.” “It’s not really a disability, is it?” “Nothing’s ever good enough for you, is it? “I know all about autism.” “He did get a diagnosis? Well, a diagnosis by itself doesn’t mean anything, does it…” Etc. etc. etc.
Parents of any child on the autism spectrum, or indeed of almost all children with special educational needs, will come across the tensions that exist between a medical model of diagnosis and categorisation and an educational model that is based on the identification of individual needs.
Christie, P. et al. (2012)
(It took every ounce of self control I had not to twat that woman!)
It was between speakers at a CPD event that I learned something very interesting in the queue for the ladies’ loo. The morning’s Education Law presentation had been succinctly summed up, “Sue the bastards,” – something the presenting claimant lawyer does very successfully by all accounts, not that she was touting for business or anything.
“Parent or professional?” enquired an unmistakably professional voice from over my shoulder.
“Parent,” I turned and smiled. “You?”
“Oh really? You must have an interesting perspective on these issues.”
She did. And what she told me about herself in the next few minutes was information more valuable to me, at that time, than anything else I could possibly glean from any of the published experts presenting there that day.
We’d driven a similar distance to the event from the Northern end of the same County. She was the mother of an adult daughter with Asperger’s and, more recently, a specialist teacher working for an autism outreach programme. Her small team were stretched very thinly and her own sprawling ‘patch’ of catchment areas included some of the smaller rural villages neighbouring our own. Including the tiny Parish five miles South-West of where we live.
Where our son went to school.
She knew his teacher.
They went way back.
“An application has to be approved by panel before I can assess any individual child’s needs and, unfortunately, not all applications are successful. We have very limited resources – like everyone else – but you could certainly try. It was nice to meet you. Good luck with everything.”
The timing of this chance meeting coincided with yet another startling failure by the school to make any reasonable adjustments for my son’s inclusion in education or his access to the curriculum there. I requested an urgent meeting with the LA’s Educational Psychologist.
The megalomaniac head teacher would actively oppose any suggestion of such an application to an external agency if it came from me. That would be tantamount to her admitting she didn’t have a clue. And who the hell did I think I was anyway? My first hand experience was limited to parenting my own son whereas she’d already met and taught everyone else on the spectrum. We all met around her table. Again. I even smiled agreeably as she underlined, in her own notes, just how well Boy was progressing under her wing. I remembered to close my eyelids before rolling my eyes and to pull my sleeves down over my hands before, quietly but firmly, pressing my nails into my own palms. Is it chilly in here?
There comes a point in these meetings, and it arrives just that little bit sooner with each one that passes, when tact and diplomacy (my tact and diplomacy) are overtaken by the urgency to snatch everyone’s meaningless words from the still air and forcibly reassemble them into some kind of meaningful action.
I wasn’t there to criticise.
They all needed to understand that they didn’t understand. The school staff simply didn’t know Boy well enough (they hadn’t known him nearly long enough) to distinguish his vocal and gestural echolalia from the social spontaneity of his peers. His tell-tale tics were seemingly too subtle for detection by their untrained eyes and ears; and no one even bothered to ask him if he could make any sense of what was going on around him. The cognitive defecits in higher level language were lost to them beneath a surface sheen of impressive vocabulary – and how dare they take credit for his numeracy skills! I recognise a spiky profile, pre percentile scoring , even if they don’t. She glared at me and we both glared at the EP, demanding a resolution to the impasse.
“I’ll do some tests,” he exhaled. “In the meantime, I think it would be pertinent to apply for an Autism Outreach assessment.”
I, in turn, exhaled. The idea was his and she couldn’t simply choose to ignore him.
Forward-wind through another year of CPD – including two addresses by the shoeless psychologist in stripy socks, refreshingly admitting that his considered clinical opinion, when presented with the behavioural and emotional realities of what he calls “autism’s dirty little secret[s],” is quite often, “What the fuck?!” – and another event chaired by the formidable ex barrister, superciliously spitting into the microphone, “Sue the Bastards!” (that never gets old) – and there’s little wonder that my own language is becoming increasingly and unapologetically colourful when it comes to these matters. Oh yes, and Boy now finally, anticlimactically, has a statement.
It is entirely unfit for purpose. Furthermore, I am offended on the tree’s behalf.
The original Proposed Statement was written for an EYFS (Early Years Foundation Stage) child and was issued 13 school days before Boy’s last ever day in EYFS. FFS! (If that requires translation, go here.) Had that statement gone on to be finalised within the statutory time frame set out for these things, Boy would have already transitioned into school year Primary-1 at the point it took legal effect, thereby immediately rendering it legally null and void. Genius. Please don’t mistake my one word summing up of the situation as sarcasm because, credit where it’s due, that was a truly marvellous chess move.
It took the LA 5 weeks and 5 days to remove those four letters, “E”, “Y”, “F” and “S” from that document and a further 10 weeks to finalise the Further Proposed Statement, to which my Further Response, detailing exactly what was wrong with it, was substantially longer than the thing itself. The LA raised the stakes to a whole other level of game play with their opening version of the Final Statement. This is a legally binding document which currently, insidiously, succeeds in preventing Boy from re-entering any kind of educational establishment outside of the family home by blatantly contravening standard safeguarding directives with the wholly inappropriate and potentially harmful missive,
“Ensure that all touch is firm rather than light.”
I’ll just give you a moment to process that…
(What the actual fuck?!)
By the end of his one and only year in mainstream education Boy was already school refusing. His mental health began deteriorating at such a pace that the paediatrician agreed to sign him off. The medical note never even ran its full course before we deregistered him out of state schooling altogether.
Aden is still stuck in that system. He spent his Christmas holidays under constant observation by strangers in an acute mental health unit, over two hours drive away from his family home, after being physically restrained by eight crew members from the emergency services. Aden’s lead psychiatrist has gone on record as stating that his full mental breakdown is the direct result of continued and continuing inappropriate school placements. Aden is not an imagined future version of our little boy. He is not some fictionalised account of worst-case scenario, possible but largely improbable events. He is a hurt, confused and frightened adolescent boy whose parents and siblings are devastated, yet remain unsupported, and who are still being fought at every turn by an LA who are stolidly refusing to pay for the special educational provision which this child desperately needs. Aden is not the real name of this incredibly talented and gentle boy, but what is true is that he is 12 years old, he has an ASD and he tried to commit suicide.
With the Final Statement came our Right of Appeal to HM Courts & Tribunal Service. The LA’s response to our appeal – the so called Working Document and their list of witnesses to be called for the final hearing is due to arrive next week. I daren’t even begin to imagine…
In the meantime, the LA ‘invited’ us to meet with one of their EHE (Elective Home Education) Consultants, in our own home, for the purposes of him explaining to us “our legal duties and those of the LA” and for us to explain to him “how we plan to provide an appropriate education for our child.” I resisted the urge to begin a philosophical debate about the interpretation of the legal framework as it pertains to education otherwise (and education within state schools for that matter) with particular reference to Section 7 of the Education Act 1996 and Section 1 of the Education and Inspection Act 2006, or the temptation to insist that we first agree upon the precise definitions of notions such as “rights”, “responsibilities”, “duties” and even “education” itself. I never even raised the issue of the LA not actually having any legal right of access and/or inspection. Instead, we politely accepted their invitation.
The Consultant handed me a copy of the LA’s Privacy Notice, outlining the authority’s reasons for passing EHE children’s data onto third parties – the DfE (Department for Education) and PCT (Primary Care Trusts) – and how that practice remained consistent with the Data Protection Act. I thanked him and then added that I had already procured my own copy.
“Where from?” he enquired. “No parent has ever said that to me before.”
I don’t suppose very many parents have presented you with a highly respected independent EP, as witness to proceedings, with your coffee before either. Sugar?
The role of mother… There is no specific training or formal qualification, but the responsibilities are enormous and the skills required diverse.
Kirkham, N. (2010)
I certainly never expected motherhood to involve so much paperwork.
·Phil Christie, Margaret Duncan, Ruth Fidler & Zara Healy; Understanding Pathological Demand Avoidance Syndrome in Children, A Guide for Parents, Teachers and Other Professionals (Jessica Kingsley Publishers, 2012)
·Nin Kirkham; The Virtues of Motherhood from Motherhood, Philosophy for Everyone, The Birth of Wisdom; Eds: Sheila Lintott & Fritz Allhoff (Wiley Blackwell 2010)