Excerpts from book (in preparation) by Jenny Ronayne

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.

Understanding a diagnosis of autism

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.