By Kieran Rose, Autistic Ambassador and author of The Autistic Advocate.
“Health and Education Professionals in the UK are, on the whole, dangerously illiterate about Autism”
If you live in the UK and you believe your child is Autistic or displays behaviours you cannot understand, who do you turn to?
Their Health visitor? The school or Nursery? The GP? The Internet?
In a way, it doesn’t really matter, because no matter which direction you turn to, you’re going to be met with a mine full of misinformation, Autistic illiteracy and frankly, dangerous neglect.
If you’re lucky enough and wealthy enough to be able to afford to be in a position where you can go for a Private diagnosis for Autism, you might want to think twice and check before you do. Most local Authorities in the UK: the NHS, the Council and Local Education Authority; will not accept a Private diagnosis of Autism, only an NHS diagnosis. Why? I don’t truly know, unless you want to wander into the dark lands of the Conspiracy Theory, which I don’t right now…
You can’t go Private, that’s not an option, so initially you’ll probably talk to the school or Nursery. There will have been problems, either noticed by the school in terms of behavioural issues, or problems not noticed by the school at all, but definitely noticed by you when the child gets home, in terms of meltdown central. It may be that your child is withdrawn and isolated, with few or no friends, or upset that their friends are bullying them, but your child can’t pinpoint why.
You go to School and, unless they are some sort of super-Autistic Aware school, you’ll get one of two responses:
- Well, we don’t see anything like this at school.
- He/She has already spent most of their school life in Isolation
Neither of which are helpful or productive…
The next step is to go to your GP.
Some people are blessed with an amazingly supportive GP who goes to the ends of the Earth for you and your family’s health. Other people wander into a GP Practice and are handed a metaphorical gun, whereby they play Russian Roulette and end up with what they are given.
I’ve heard horror stories. A lot of horror stories…
Dismissive GPs, GPs that have blamed the parents, GPs that have informed Parents that as there is no cure for Autism there is little point in trying for diagnosis, GPs that have little or next to no knowledge of Autism beyond superficial Myths and have refused to refer a child because the child has made eye contact…
You get the idea.
If. It’s a BIG if, but if you are fortunate enough to get a referral, you then enter the minefield known across the UK as CAMHS.
CAMHS stands for Child and Adolescent Mental Health Services.
That’s right, ‘Mental Health’.
Someone, somewhere in the great hive of bureaucracy that is the wonderful NHS, (no doubt fuelled by Governmental agendas, with those agendas in turn fuelled by the shenanigans mentioned in my article called: ‘Autism Speaks and it’s influence on the UK (And the world)’), decided that Autism, a Neurological Developmental Disorder, should be filed under the section entitled ‘Mental Health Problems’. Alongside Depression, Anxiety & panic attacks, Bipolar disorder, Eating disorders, Obsessive-compulsive disorder, Personality disorders, Post Traumatic Stress Disorder (PTSD), Psychosis etc.
All issues that are NOT developmental disorders. All issues that ARE treatable to some extent by a combination of medications and therapies and, all issues that the subject is NOT born with… (Please note that I am not diminishing any of those issues at all).
Anyway, CAMHS will be your destination next and God Bless You And All Who Sail In You, you’re going to need all the luck you can get. Firstly, it’s a postcode lottery as to the level of support you get and the speed in which you are seen, put through triage and, if necessary, put on the path to diagnosis.
Before we get to the diagnostic process, we’ll talk about the first section. Now CAMHS are an important service. They are on the front line of a rising epidemic of mental health issues and depression amongst children and young people in the UK. In fact, so important is their place in the world that “Jeremy Hunt, (current Minister of Health and Voted #1 Most Hated by NHS Staff) has described CAMHS as the single weakest area of NHS provision.” Mr Hunt made this statement in 2015 and the Government has made lots of noise about investing in Child Mental Health provision since. It was actually a policy pledge in their recent Election campaign (You know, the one they won based on making PROMISES).
Which is interesting because according to a recent Parliamentary report: “Mental health problems which begin in childhood and adolescence lead to significant distress, with a range of negative impacts on individuals and families, and these can continue into adult life unless properly treated. Mental illness in children is common and the majority of adult mental health problems begin in childhood: 50 per cent of adult mental health problems (excluding dementia) start before the age of 15, and 75 per cent start before the age of 18.” So, you would think Mental Health in children and Young people would be a priority. Actually you’d think Mental Health in children and Young people would be THE priority, considering without a mentally well-balanced workforce in the next few generations, the country will fall flat on its face.
Yet, CAMHS continues to be massively underfunded and is literally haemorrhaging staff.
A recent news report on Sky, based on findings by the NSPCC, headlined “150 children a day being denied mental health treatment”, made the absolutely horrifying claim that “More than 100,000 children have been rejected for mental health treatment by NHS Trusts after being referred in the last two years.” and later, that “The total figure for the NHS in England is likely to be higher, as only 65 of the Trusts in England responded, and one in five of them declined to share data for rejections.”
All of these facts and figures may make you wonder what all this has to do with Autism. Diagnosis of Autism rose 25% between 2012 and 2015, according to this article in Schoolsweek, attributable to the changes in diagnostic criteria and the increased Awareness amongst the population. This has obviously had a massive effect on the ability of CAMHS to keep up with all the people coming through their door.
In South West London, notes from a May 2017 board meeting of the mental health trust for patients in Kingston, Merton, Richmond Wandsworth and Sutton, showed that incidences of Autism diagnosis assessments stood at 1500 for the previous year, double the capacity of the Trust and, as is also shown in this article in the Independent newspaper entitled “NHS proposals to reduce autism diagnoses in south west London ‘deeply concerning’, warns charity”, and commented on by the National Autistic Society; the board had asked to “…review who is eligible for Autism services and restrict diagnosis to children with an additional mental health condition, such as depression or attention deficit hyperactivity disorder (ADHD).”
I have been told by members of CAMHS staff that they are incredibly understaffed and that is the single most reason that the assessment and diagnostic process for Autism in County Durham (Where I live) is so long. My son, Quinn, entered the CAMHS service at 4 years old and was diagnosed at 8 and this is being replicated up and down the country, with waiting times ranging from between two and 5 years on average.
That’s assuming you can get through the door in the first place. In the last week alone I’ve heard directly from two seperate sets of parents in my local area that have been told:
- A: Their Daughter would not be entered into the diagnostic process because the parents had put too many support mechanisms in place, therefore making her ‘too’ High Functioning…
- B: Their son does not present as having significant symptoms of Autism, nor any other Mental Health Qualifier (This decision was based on a 5 minute phone call with Administrative staff on a child who presents with very obvious Autistic Traits and also self-harms)
Again, only two stories, but two stories that are being replicated up and down the country, every single day.
It seems that rather than publicly prevent children from being supported and put on the path to a diagnosis, they’re are now just using bureaucracy to block up the front door and get parents caught in a revolving door of referral and re-referral, probably in the hope that they give up.
Every day, I and others in the Autistic community, are approached by Parents desperate to understand their children and hopeful of support and strategies in which to in turn support them with.
These are not just the children whom have not been seen or diagnosed by CAMHS but also the children who HAVE been. The interesting thing with CAMHS is that there is no post-diagnosis support for Autistic children, unless they have an accompanying issue, such as ADHD or depression (Even then support services are next to useless). So, similar to the world of Adult diagnosis, children are being diagnosed and dumped. Their parents often referred to a short course instructing them about Autism and then just left to get on with it.
It’s Autistic people who are left to pick up the pieces.
It really comes as no surprise to me that so many Parents, who desperately don’t understand their children, fall into the trap of cures and treatments, or fall under the influence of ‘Autism Mums’
Once a child is diagnosed, the purview falls almost entirely under the remit of Education. Therein lies a problem:
Schools aren’t built for Autistic people. They are simply bastions of hell, with vivid colours, noise, throngs of people, timetables that flip on their heads by the hour and horrifying child-like Somme equivalent playgrounds.
70% of children with Autism are educated in mainstream schools, which would be an amazing figure if teachers actually knew anything more than a smidgen about Autism, beyond what they’d seen on Rain Man.
My son, Quinn, for example. We are blessed with Quinn’s Junior School. Pre-diagnosis of Autism, they were making allowances and exceptions for him, they worked with us to make sure he was as happy and settled as he could be, they listen to him, they listen to us. Post diagnosis they are accessing every means of support possible for him. Which is how it should be. Sadly, even they though, will admit to having a superficial knowledge of Autism and this is despite having had Autistic children through the school previously.
The biggest difference between Quinn’s experience at his school and those who have gone before boils down to onething: Knowledge. My knowledge.
There is no power like walking into a room full of people and saying:
“Tread carefully, you are not the experts here, I am.”
I don’t mean that to sound big-headed, and i haven’t had to do that with Quinn’s school (other organisations, yes), but from day one i explained to them that Quinn will not be repeating the experiences I had in school. That it is not acceptable. My message was conveyed without room for doubt. I have done the same with Olivia, who has just started at the Infant school.
I’m lucky to a degree though. I wield knowledge and that gives me power. As i said recently to an Occupational Therapist who tried to fob us off with a three hour sensory course. “We are not your usual parents.”
But if they try to fob everyone off (which i have no doubts they do), how many people unwittingly fall into line and allow themselves to be shepherded. How many people don’t have adequate knowledge in order to be able to say:
“You are failing my child”
The stories I hear every day from Parents who are struggling with their children’s schools are, much like those who have struggled with the Health Authorities, simply horrifying. Schools do not understand these children, they do not know how to meet their needs. A figure almost as disgusting as the 16% of Adult Autistics in full employment in the UK, is that 17% of autistic children have been suspended from school; 48% of these had been suspended three or more times; 4% had been expelled from one or more schools, as was discovered by this report by the National Autistic society. But this is the end product of children being pushed into isolation for their behaviour, or worse, as this article from the Daily Mail (Yes, I know) titled: “Nearly half of autistic children ‘have been illegally excluded from schools because teachers cannot cope with their behaviour'”, shows. According to them, up to 20,000 school age Autistic children have suffered from unofficial exclusions.
Pupils with Autism as their primary need on their statement or Education Health Care Plan (EHCP) now make up 25.9 per cent of all pupils with statements. And that’s just the ones that qualify for tEHCP’s or Statements. That’s the largest percentage of any special needs area in Mainstream schools yet, a survey conducted by NASUWT revealed that roughly 60% of teachers had not been given the training necessary to teach children on the autistic spectrum, despite the fact that every teacher will have Autistic students in their classes at some point.
So, as a parent where do you turn? In my Article called ‘Talking without words: Communication and Autism’ I’ve painted a bleak picture of some of my experiences at school as an undiagnosed Autistic and obviously here, for those who are diagnosed it’s pretty bleak too.
The answer is to educate yourself. As I’ve mentioned previously, knowledge is power. As the parent of an Autistic child it is your responsibility to Advocate for them until such time as they can Advocate for themselves. So what best way to sharpen your skills than to turn them on your School, Local Education Authority, or NHS. School is where your child is shaped and moulded into the adult they eventually become. If your child has an horrific experience at school, it will haunt them for the rest of their lives and influence every decision they make.
So: educate yourself, arm yourself. Talk to professionals, sure, but be aware that their experience is knowledge gleamed from text books and mostly other parents. Read, read, read, immerse yourself in a world of books on Autism. There is help available, it’s about knowing where to look for it and having the ability to stand up and fight for it.
If though, you wish to know the mind of your child and your child can’t communicate what they need to, who else do you know that will have gone through similar experiences? Who else do you know that can give you an idea of what sensory issues your child might have, what might irritate them, what they might not understand? Who else can give you ideas for a strategy that has a proven track record, because they’ve tested it on themselves?
Talk to us. We don’t bite. If you’re kind to us, we’ll be kind back. We aren’t scary. We’re intelligent people (despite what the Narrative of Autism might have you think) and we’ve been through what your children is going through. We’ve lived and breathed individually or collectively every single problem your child could go through or has been through. We blog, we’re on Facebook, we’re in your town, in your street. If you still can’t find us (even though we are here waving), storm down the doors of your GP surgeries, your CAMHS centres, your Children’s Centres and demand to know why they aren’t putting you in touch with us. Because the ironic thing is, we are trying to be a resource to Professionals and they JUST AREN’T LISTENING. They don’t want us.
We ARE your children.
The Health system is failing your child and you. The education system is failing your child and you.
Don’t fail them too.