Now this may seem like a very critical blog post and you are correct, it is. Whilst I am a Home Educator and some may see a cognitive bias. I am actually a middle line type of person. I actually do have a child at school also and when all my children were at school, I thoroughly threw myself into volunteering. First chair of the PTA, Reader-listener parent. Always volunteering to help on trips etc and the school were more than grateful. In a small village school, I was the type of parent they wished they could multiply. That was whilst I had Neurotypical, high achieving children. Now here is where it gets a bit muddy; I have four children. Only the first two jumped through the social hoops of primary school.
Watching my third child go from a happy child that enjoyed the sensory activities of nursery, such as water trays. Turn into a severely depressed little girl who started to hate school. Children were noticing the difference between her and them. She was isolated and rejected. She had two friends in school but they did not like each other and both also had nontypical personalities which is likely why they all connected.
The school did realise she had some level of learning difficulty as she was only just on level 2 reading after her first full-time year of school. This was half of the expected achievement. No matter they said. She is just shy, they said.
The next year they decided to initiate a reading recovery program in which she excelled. Well, of course, she did. Firstly, the 1;1 meant she did not have the distractions of the classroom around her, and the lady used Dyslexia techniques such as 3d letters. Yes, we now know she is Dyslexic but no one did back then. As a parent and someone who respected teachers, I asked them if they were noticing anything different in my daughter. I knew she certainly seemed different to her older siblings but I self-doubted and stated that she would be as all children are individuals. I asked staff because they deal with children all the time and would have known, wouldn’t they? Turns out, the answer is no, they pay very little attention and are largely untrained. ( That is not their fault and management and Government are letting them down big time). However, their duty as I know it now should have been to pass on my concerns and move it towards the School nurse. Instead, they excused the fact that she was avoidant, literal and overstimulated as being “A little bit quirky”. Ah, that phrase ” a little bit quirky”. I had no idea how that very phrase should have confirmed I indeed had a Neurodiverse child.
During year 2 of primary school, her “quirkiness” developed significantly and she started to self-harm. We’re discussing a child who was 7 years old at this point. Some adults fail to even recognise that children have that level of emotional turmoil but I promise you, they do. In the studies of Autism, the fact she was exhibiting traits and comorbids in this case, really should have helped get her assessed sooner. Unfortunately, the SENCO didn’t deem her as bad as some of the children she was “taking care of” and I’ll use that term extremely loosely. Massive hint here; Children are individuals and regardless of your unqualified medical opinions, they should all be taken at their own needs and you could have multiples of severe cases to work with but if another child has needs that are above those of an average child then they fall under your duty of care by law. We were unfortunate enough to have a SENCO who couldn’t even write a report for the Community Paediatrician, despite knowing my child had been referred by the school nurse (eventually) and was sent to CAMHS. Despite being asked to do so by the Head Mistress. That should be deemed medical sabotage and should have her removed from her job in my opinion but alas, I realise that is just an opinion.
Something is happening in this country and it stinks. The NHS in some areas are reducing access to the Autistic pathway and in doing so, deny any action is necessary. Now early intervention is paramount to aiding the child before comorbids set in and make the life of an Autistic child difficult. This is not merely my opinion and the NHS have actually stated that they are so underfunded that they are not in all cases able to even meet NICE guidelines. Well, if you say so then we must just accept that, mustn’t we? Or not, seeing as you have legal duties.
Most would not even correlate the NHS with the School system but in a time when parents are Gaslighted, undervalued and ignored as an ignoramus, they very much are entwined.
Without a diagnosis and some cases, even with a diagnosis. Schools do not accept that they are not meeting the needs of a child. That is their legal duty if a child is enrolled with them. Scenarios occur as they did for us where, once finally obtaining the attention of the Community Paediatrician, we are sent away with possible attachment issues. Hilarious if it were not so cruel.
With limited knowledge, this suggestion does two things. It implies that the child is not on the spectrum at all and that the child must have suffered from some form of neglect because a teacher will not know the difference between attachment disorder and reactive attachment disorder. This immediately places the parent in the naughty corner and their motives are now questioned when all they wanted was for their child to gain the support they needed.
The child is now back at school with no extra support and now teachers even feel validated in punishing the child for their traits. The relationship breaks down and the child in our case ends up being Home Educated because the parent can not see their child hurting anymore. Win-win for the school. They no longer feel they have to offer anything to that child. Parents accept this because they do not have the information that lets them know that evaluation and support should be based on need and not a diagnosis.
School accepts this choice, even if they genuinely know a child has SEN. Why? Because a child with SEN drains their resources.
The parent is still stuck and now has a child who is battling their emotions, thoughts and abilities against being told by a doctor that there is nothing “wrong” with them. Quite right Doctor Useless, there is nothing “wrong” with my child but she isn’t Neurotypical in a world that only accepts Neurotypicals, so she needs to know who she is.
Hence our next step and one only found through much support in social forums. We save up and travel 100 miles to see a Private Consultant and Psychiatrist. Whoops, actually, this is the second set of private professionals as we also had a Dyslexia assessment which proved to be needed. As well as a Visual Stress assessor. The medical bills were soon adding up here. She was indeed diagnosed with High Functioning Autism and we were informed she would have been diagnosed through the ADOS alone as she had moderate traits and was obvious.
This diagnosis and report were sent on to our local GP, who did absolutely nothing. Didn’t acknowledge receipt. Didn’t offer support or services. By this time I was well aware this could be the case but my daughter needed to know who she was. That she was not alone and she was okay being herself.
Not everyone has the resources available to either Home Educate or seek private diagnostics and that is not limited to financial resources.
There are too many children that are not able to deal with mainstream school and do not qualify for SEN schools, which I have gripes about also. Our children have value to society and they are being treated like they don’t.
Everyone in the chain needs to do their moral duty. Nurses, Doctors, Teaching assistants, Teachers, SENCOS, Heads. We as a society should not be accepting second-class support for those who need support. Plus, it has already been stated that “pushing the issue down the line” costs more money in the future and so is quite short-sighted.
If you stayed with me thus far, you are admired and appreciated. Thank you. If you are reading this and it helps you know you are not alone; I hear you. This journey is a difficult one but it’s nothing compared to those who our State is paying a disservice to.
Autistic children become Autistic Adults and deserve full services as much as everyone else.
Thank you for reading.
A truly pissed off Mum!