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OPEN LETTERS

After we read the article below by the Independent, mASCot wanted to respond to the Editor. Many papers carried this story which we feel is damaging to parents and SEN children alike.





Stop the blame culture-support SEN parents

To The Editor 

With regard to your article 23 February, ‘Pushy parents causing children to be misdiagnosed with special needs’, that focused on a report by GL Assessment, having commissioned researchers YouGov to ask 800 teachers a leading question, if they thought there was a 'misdiagnosis' of SEN in children and specifically what part parents played in it. 

As a support group for families with children on the autistic spectrum we would like to clarify some points we feel were not fully addressed in the reporting of the research findings. The disappointing journalism, with its use of inflammatory language, particularly in the headline, has dug an even bigger hole in knowledge and understanding. There is already a huge deficit in communication and cohesive thinking when working with children and young people and the reporting of this survey might perhaps have focused on the real issues raised;  the underfunding of SEN, the concept of inclusion that has lost its way in too many mainstream schools and the worryingly low level of regard the teaching profession apparently holds SEN parents in.

⦁ The basis of the report referenced Ofsted’s citing of too many schools labelling children and young people with SEN as a means of securing extra funding and for covering for inadequate teaching where league tables became targets. This apparent blame for SEN 'mis-identification' is being shifted onto ‘pushy’ parents ‘distracting‘ teachers from those in most need, instead of the current cuts in school funding which is the real crux of the matter.  

⦁ The issue is not the 'over identification' of conditions but their under diagnosis. To promote the notion that a diagnosis is somehow easy to obtain and given for no reason, or that health practitioners are corruptible, is wholly irresponsible and wrong. If private schools have a higher percentage of children with accommodations, adjustments and differentiation in class/exams it is because they and their parents fund thorough assessments more than state schools can. The article might have focused on raising the identification bar, not dumbing it down. 

⦁ The fact is our neuro-diverse children are expected to fit into a schooling system that is designed for neuro-typical children. Yet too often their needs are not identified and when their parents seek a level playing field they are deemed to be asking for an ‘unfair advantage’. Until the current, antiquated education system is re-designed in a way that accommodates different ways of learning and the assessment of that learning then the perception of some families receiving an unfair advantage will remain.  

⦁ That there is a myth propagated that getting a diagnosis leads to a flood gate of extra support or benefits. A diagnosis leads to nothing if a school fails to provide for that child or young person and disability benefits are tested based on proven need. 

⦁ Your article made no mention that GL Assessment co uk, who conducted the research, advertise their assessment tools to schools. 

Tania Tirraoro in the Special Needs Jungle has thankfully written a balanced view which covers the issues https://www.speicalneedsjungle.com but we would like to stress something else this article exposes.

Behind the name calling, questionable article headline are our children. The children and young people on the autistic spectrum, the children with ADHD and related conditions as well as mental health issues caused by the struggle to fit into a world that struggles in itself to understand and falls short in recognising differences in processing, navigating confusing social situations and  sensory overload. Whilst we acknowledge some teachers make their own efforts to learn about these invisible conditions, many have seemed reluctant and unwilling to allocate time for sufficient support.

If every school and every teacher were able to assess experientially, and with empathy, then we would not be in the situation where schools are ill equipped to work with SEN children and young people. The report itself stresses the importance of accurate individualised assessment of need but where the report falls down is the fact that this simply does not happen. There is gross discrepancy of understanding, expertise and standards of practice, not just between schools but between teachers within schools. Parents only fight for a diagnosis or to get an ECHP when in-class support has failed and then often have to battle resistance from teachers who failed to understand their child's conditions in the first place. That’s not being ‘pushy’, that’s reality. 

At mASCot we have many families with and without a diagnosis who report huge struggles with their schools just to get basic support in place. It is because of this that parents are forced to prove their child’s case by chasing diagnosis, EHCPs and wider medical/professional expertise and then have to constantly check what is specified is actually being done. No one wants to do this, no one wants the months and often years of struggling to access an assessment and then push to get some support in place or to battle the system at a tribunal when help was not forthcoming. No one wants their knowledge of their child rubbished and their parenting blamed for a condition their child was born with. No one wants to see their child struggling and suffering in pain that if on the skin or in the limbs would be treated with kindness and respect but which instead goes over schools' heads or under their radar. The notion that there is a large cohort of parents willing to put themselves through this ordeal merely to secure a few extra minutes in an exam or a question read to their child, is as ridiculous as it is insulting.  

Instead of feeding into the prejudice by vilifying those parents who have to negotiate daily so children and young people have a chance of accessing their education, the article might have taken a deeper look at what is going on. The real story is a creeping disrespect being shown to Parenting, also seen here in a derogatory article in TES article Nov 2016 'how to handle pushy parents’ www.tes.com/news/tes-magazine/tes-magazine/how-handle-pushy-parents in what appears to be the exposing of an underlying hostility and demonising of parents, many of them with vulnerable children. Instead the article chose to focus on marginalising families with special needs while bolstering a perception that some families are taking scarce resources from others. How to feed a mini moral panic - diffuse blame onto primary care givers, already weighted low with the uphill task of supporting a child with needs made harder by a judgmental schooling system. The real issue that might have been raised from this 'loaded question' survey is the underfunding of special need provision and training in schools and a latent disapproval and misunderstanding of SEN children and young people in society as a whole.   

At a time when parents, schools and health practitioners should be working together in partnership, the basis of the SEND reforms, that the hidden prejudice of a large number of the teaching profession has been exposed is as deeply worrying as is the press stoking divisions. 

In the wider picture we are living in an uncertain time and many minority groups feel threatened. The use of inflammatory language to grab headlines whilst promoting a company for marketing purposes, merely feeds prejudice, fuels division and intolerance and leads to persecution and hate.

So to all the 'pushy parents' of vulnerable children out there - keep pushing, do not allow yourself to be frightened into silence for fear of being labelled a trouble maker for your child. Join groups so you are not an isolated voice, as it is harder to be picked off and put down, and call out the marginalising of vulnerable families for what it is - pure prejudice.  

On behalf mASCot Committee
Brighton & Hove

mASCot – managing Autistic Spectrum Conditions Ourselves Together

Notes to Editor 
mASCot is a parent led support group for families who have children or young person with an Autistic Spectrum Condition. mASCot enables families to connect and meet others in the same situation as themselves. We currently have 380 family group members from the Brighton & Hove area and we use the same schools and services. mASCot has become a strong support network and the support we get from each other has been a lifeline for many of our families 






If you would like to make any comment on this response from mASCot