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It has recently come to the attention of the press and the current government of the UK that there is a high number of children who are refusing to return to school following the Covid pandemic. This should not come as a surprise to anyone who knows anything about special educational needs and the paucity of provision for this large number children and young people.

In the UK, the majority of young people with autism are expected to attend mainstream schools. There are mainstream schools existing which provide accessible and helpful support for young people with autism but here, I am focusing on the vast majority which do not and which may pay lip service to the idea of supporting those with autism but fail to put this into practice. All too often even where there are aims agreed at management level and set out in the school’s prospectus, these do not translate into practice or understanding in the classroom. Even where the parent has been through the time-consuming, frustrating, drawn-out and exhausting battle to obtain an EHCP (Education, Health and Care Plan) for their child, this is far from a guarantee of appropriate support or understanding of their needs. It is no better now than it was 30 years ago – indeed, it is harder to obtain an EHCP than it was to obtain a Statement of Special Educational Needs, which the EHCP replaced. It was designed to be so. The excuse was that with better support being provided by schools, fewer children would need an EHCP. Sadly, that better support did not materialise.

As a society we highly value, even over-value academic learning yet at the same time our schools fail spectacularly to nurture this in academically able students with autism. Typically, autistic children and adults soak up information like blotting paper soaks up ink when it comes to subjects in which they are interested. They very often have encyclopaedic  knowledge of such subjects and that should be a key to learning. Instead, we try to force triangular students into the square holes of our educational system and then punish and discard them when they don’t fit. We throw away brilliant minds because of our own rigid and inflexible attitudes toward schooling and teaching. We should be making use of their interests and focusing on them not only for their own sake but as a means of introducing related subjects, expanding interests and as teaching tools for other subjects.

As it is, not only is mainstream education not designed to benefit the autistic child, but rather, we could not have devised a system more likely to be torture for those on the spectrum.  It is another example of our way of top-down designing rather than looking at the needs of the children and how best they learn, not just what we as a society believe they should learn and how they should do this. Too many schools purport to understand autism and to support autistic children and young people, yet in practice, these young people are punished for being different, for not getting homework in on time, for being rude, for not understanding hidden rules that they were not been told about, for not trying more to fit in with the others, for being late, for being disorganised, for not wearing uniform correctly, for not having the right books for the class, for not mixing in, for not contributing to group work, for running out of class, for refusing to eat in the canteen, for behaving in ways that look odd or aggressive, for not following school rules that are illogical or irrelevant, for having meltdowns and more…

How good we are at punishing and how poor we are at investigating what underlies these behaviours and difficulties. It really is not rocket science, yet schools do not read the literature or listen to autistic people. Lack of funding is often blamed, but how much does it cost to read a few books or to go on YouTube and listen to autistic people explaining how it is for them and what helps. And the biggest irony is that if we designed schools as though all children were autistic, every child would benefit, whether autistic or not.

 

 

 

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Accepting the diagnosis
Painful though it may be initially, acceptance of your child’s difference is crucial for both you and your child. For you because resisting the diagnosis prevents you from learning ways of opening up communication with your child. Resistance prevents you entering the fascinating, sometimes bizarre, sometimes baffling, sometimes infuriating, sometimes exasperating, often funny, often surprising and always edifying world of autism. Resistance leads you to trying to force your square peg child into the round hole of the neurotypical (NT) world. The result is frustrated and angry and worried parents and a distressed and angry child. Or worse, a distressed, angry and highly anxious child. However much you might wish it, your child does not think like you, may not enjoy the things you think he or she ‘should’ enjoy, does not experience the world as you do. Your child is likely to have interests and fascinations that appear baffling to an NT but which bring great satisfaction to the child, whether a spinning wheel, manufacturers’ marks on drain covers , electricity pylons or collecting car registration numbers and he or she is likely to acquire an encyclopaedic knowledge on any special interests.

Acting a part is exhausting
As your child grows up, he or she may desperately want to acquire the skills which enable smooth interaction with family and friends. Many people with autism realise that to be acceptable to others (NTs) they have to pretend to be like them – to mimic social behaviours. They may spend a lot of time observing NTs and copying what they see. They can often be so successful at this that NTs don’t believe they have autism and so make no allowances for it. That results in social interaction becoming even more demanding for those with autism as they struggle to work out whether that was a joke or an insult, whether that was literally meant or whether they were expected to ‘read between the lines’, whether they responded appropriately, whether the laugh they got in return was ridicule or appreciation and so on. They spend their days in pretending to be who they are not. They feel that they are acting a part and are not allowed to be who they really are. This is exhausting, not to mention humiliating and it can often be a huge relief to get home, shut the door on the NT world and try to shake off the anxieties of the day knowing they will be facing them again tomorrow and the next day and the day after and the day after that…
It is not surprising then, that one more demand on reaching home – however reasonable it may seem to the NT – can be the final straw and a meltdown ensues to the anger of the NT and the distress of the child. Establishing a homecoming routine can be very helpful to both parent and child. For example, it could be that the child comes home and can then disappear to his/her room for an hour, after which is dinner, after which is homework (time limited not task limited!!), after which is TV or tablet after which is bath and bed (or whatever routine best suits the needs of the child and the household). The benefit of such a routine needs to be anticipated before it is needed! Best to put in place as something that is expected as part of the new venture of going to school. Where there is change, there is also the opportunity of putting in place new ‘rules’ around routine so they are known about and expected.

Too often the response is to punish or suppress unwanted behaviours which does nothing to help the child avoid such distressing experiences. Neither does it help the parent (or teacher) as it does not allow them to make changes which can avoid such responses from the child. Seeking and understanding the cause/s of difficult or challenging behaviours allows the development of strategies to avoid or better manage them – a relief for both parent (or teacher) and child.

This diagnosis is not ‘labelling’ a person, but enabling them and others to learn and understand how differently the individual with autism sees things and to make adjustments to ease their passage through the world (which is not designed to be a comfortable or easy place for anyone with autism).

We don’t think of it as labelling to explain that someone is colour blind, but a helpful piece of information. So instead of becoming impatient with the colour-blind child as they persist in failing the colour-sorting task and insisting they do it again until they get it right, we realise that this task is not within their power to achieve without support. We realise that we then need to teach the child strategies for times when it is important that distinction is made between colours (eg; the sequence of traffic lights).

Even today, with all the increased knowledge about autism, I read a letter from a CAMHS psychiatrist which still clearly shows a lack of understanding that autism is by definition a developmental disorder, so that the difficulties experienced by his patient must be understood in the light of the diagnosis of autism rather than a  personality disorder resulting from life history and events.

You cannot understand the person with autism unless you understand what autism means – a different brain, processing differently from the ‘norm’. To read autism as a personality disorder is not only unhelpful for the clinician as little progress will be made, but can be damaging and confusing for the autistic individual themselves.

I suspect that many individuals are misdiagnosed as Borderline Personality Disorder and other conditions because too few clinicians are familiar with the (however subtle) profound differences inherent in autism.