Last week I shared an article about the difficulties autistic children can have in school on my Facebook page.
Someone commented with "We all know the problem. What is the solution."
This sums up succinctly all the difficulties that so many children and their families have.
Very often the child knows what's wrong. Often the parents know what's wrong. Sometimes an autistic person reading about a situation knows what's wrong. Between us we have lots of solutions, things that would improve life for children in school on an autistic population level and also on an individual level. Solutions which may be free, solutions that require training, solutions that require a whole transformation of the schooling system which, arguably, is not only failing children with additional needs but also those without.
Putting aside the idyllic notion of an educational overhaul, because let's face it, right now the government is hellbent on destroying it rather than improving it, let's try to focus on the alternatives, little changes that could be relatively easy to implement, but that so many are resistant to.
We need to understand why there is resistance, why are teachers and support workers so sure of their knowledge that they will dismiss people's actual experiences? It's rather like white people telling black people how they should feel about racism, thin people telling fat people how easy it is to diet, in my opinion it boils down to cognitive dissonance. Of course local authorities hanging on to their money, or spending it in dubious ways doesn't help, but there are still thousands of front line workers who seem to have no ability to empathise with the distressed children in their care.
Sometimes people hold a core belief that is very strong. When they are
presented with evidence that works against that belief, the new
evidence cannot be accepted. It would create a feeling that is
extremely uncomfortable, called cognitive dissonance. And because it
is so important to protect the core belief, they will rationalize,
ignore and even deny anything that doesn't fit in with the core belief.
Source of quote: Frantz Fanon.
I believe this explains many of the problems that occur when those with direct meaningful experience with autism clash with those who don't.
To be fair, there are those who have no direct experience, but who are more able to take on board what they're told and believe it.
Over the years we have come across this phenomenon several times. Well meaning folks trying their best to persuade us that all is well, there's nothing that a bit of discipline won't solve. Because their mindset is that autism is visible and obvious, so when autism isn't visible and obvious, they literally cannot see what is in front of them. Now this is hurtful and frustrating when this comes from family and friends, but when this comes from within school, or from doctors or CAMHS, it can be downright disastrous.
Cognitive dissonance can be seen on social media, certain parents who cannot accept that the adult autistics they are talking to online were ever anything like their child, leading to accusations of fakery and ignorance. People who cannot see that autism is anything other than a death sentence, who cannot accept that autistic people themselves are telling them otherwise.
I can see how it happens.
A bright young person leaves school and enters university, they spend years studying for their chosen degree, learning from set textbooks which tell them facts about whatever it is they're studying, be it psychology, teaching or whatever. Once they are in their chosen job, they continue to believe what they have learnt. Anyone who questions them, or doubts them, is usually not in a position qualified to challenge, to tell them that they're not understanding something.
When it comes to autism, training courses are basic and inadequate, and establish further the narrow comprehension of autism, but with the distinct disadvantage of training session attendants coming away believing they have a greater understanding, and what's more, they have a certificate which proves they know more than mere parents, who have no such document. In the "real world", when autism is involved, experience counts for nothing apparently.
This is how we see parents explaining what their child is doing, to be told there's nothing wrong, the child is fine.
Thinking about PDA specifically, because it doesn't quite fit the version of autism that is well known - repetitive motor mannerisms, no eye contact, limited interests, poor social awareness - they cannot equate our children with autism on any level, because their learning did not involve autism in an atypical, seemingly normally presenting, personal level at all.
We personally encountered this with the majority of experts we had any involvement with. They had their views, from a very neurotypical, fresh out of the manual, way. And because the textbooks rarely accept that autistics have any self-awareness or insight into their own difficulties, autistic people themselves are considered not qualified to tell it like it is and are ignored.
People have a very strong bond to what they have learnt, and to accept that maybe there is more to know, or that the textbook read in university days is now obsolete can be difficult to take on board.
I think because PDA boy has presented in such a complex way - quite serious difficulties at home, violence, very impulsive behaviour, swearing - combined with excellent masking in school - we have learnt that what you see is not always what you get. Just because behaviour in school is ok, doesn't mean that the child is fine.
Just this morning I read another excellent blog from It Must Be Mum, detailing more difficulties between a local authority and a family. In it, the author touches on why human beings have become like this, how are they comfortable writing strategies that will ultimately lead to the destruction of the child?
I strongly believe this is an example of cognitive dissonance. No large group of people is so evil as to deliberately plan to shatter a family, surely? And not just one family, but hundreds of them, if not more.
As Edmund Burke said, "All that is necessary for the triumph of evil is that good men do nothing". But what if those acting in a way that is perceived by us as evil are not aware that they are? What if they truly believe that they are working hard to improve things for our children (if only us parents would play along, tsk)?
Having spoken to many people at length about the difficulties for families in this position, I truly believe that most of the problems we have are down to ignorance. Autism is viewed with suspicion, even through hospital assessments there's an element of rooting out the "real issue" - what are the parents doing to cause this? If this attitude is so prevalent from the very base services, where there are highly trained individuals who really should have better understanding towards the very conditions that they're diagnosing (or not, as the case may be), then how is there hope for any of the other services that initially branch from this foundation of vague misunderstanding and mistrust? From there we can track interlinked services with the core belief that somehow families of non-stereotypically autistic children (of which there are many) are being dishonest, are exaggerating their child's needs, are not disciplining the child and therefore creating a problem for school, are out for gain, financial or otherwise, are ignoring prescribed advice so therefore are being obstructive.
As well as the services which could, in the same time it takes to be disparaging and ignorant, be supportive and helpful, we have an awful lot of society who hold the same views. Autism is viewed with contempt, behaviour is deliberate and a sign of poor parenting and weak characters.
It is society that is the problem. Someone not living an autistic life does not have to have the same understanding, does not have to know their child inside out, protect them from triggers, coach them through life, whilst simultaneously trying to keep themselves healthy, raising other children, possibly also with additional needs.
It is far easier to blame and wash your hands of a situation with a clear conscience, like we have seen with certain people we were close to, like we have seen with all but three people involved with PDA boy, and every single person we tried to involve with Brian, their intrinsic knowledge that their experience of gaining qualifications and experience means they are right and we, the families, are wrong and making poor excuses for our lack of parenting skills, and the behaviour of our children.
Far easier to go home in frustration after a day's work, ready to kick off your shoes and relax, thinking "well, I've done my best for that bloody family, they just don't want the help!" than to go home and have to live with the knowledge that they have badly let another child down, that their predictable actions may play a part in leading to a disabled child's almost inevitable breakdown.
These are not bad people, these are normal men and women, holding down jobs, trying to do their best like the rest of us. The mindset is that they are the ones who know what's going on, and we are the thorns in their side, the families (and they must encounter loads of them) who don't play ball, who keep fighting for their children despite the experts evidence which is often twisted to suit their set beliefs.
Like I said, most parents I have had any contact with have solutions, autistic adults who have survived the deficient system have solutions, children within the system have solutions. Why are these the very people who are being ignored?
We must reach a tipping point, a time where training becomes meaningful and useful, where lived-through experiences count for more, where our children are protected, proactive support put in place as standard (as more often happens with their physically disabled counterparts), strategies, classroom adjustments, allowances for behaviour related to the child's disability must all be key solutions for our children, but as this relies on cooperation from those who hold the power, we still have a lot of educating ahead of us. We must keep highlighting the failures, celebrating the successes, we must ourselves become qualified to change the damaging mindset from within.
I have no doubt that change will come, but whether it will be in time to protect this generation of young people, I'm not so sure.
Of course there are many families whose children are supported well, but due to the nature of the internet we do hear more negative stories, but the fact remains that too many families are let down by the services that are there to support them, the fact remains that children are removed (or threatened to be removed) simply because involved parties don't understand the issue, and are not willing to learn.
Imagine a world where it's a given that our children are valuable members of society, rather than a drain on services.
Imagine a world where it's assumed that all our children have the potential to be happy, rather than the premise that it's ok for our children to be suicidal because that's normal and acceptable for autism.
Imagine a world where information about autism comes from those who live it rather than from observing neurotypicals who, whilst they may have a decent textbook understanding, can never truly know what it is to be autistic.
We must all, as parents, as autistics, pull together to educate the systems which push so many children to collapse, and hold to account those whose actions, consciously or as a result of cognitive dissonance, have led to a situation where too many families are vulnerable.
The solution is to educate those whose core beliefs are damaging our children.