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Dear Gillian: My Son has Autism

These diagnoses may come as a relief, or otherwise, it may come at the end of a long period of concern, when you must have wondered what on earth is happening to your child, and what could possibly be the cause of their challenging behaviours.


"You know him best"

Dear Gillian,

I have a 5-year-old son who was recently diagnosed with autism. One of his habits is biting – he likes to sink his teeth in to almost anything. He stopped doing this for around 9 months, but this habit has now restarted again. Similarly, he stopped throwing objects around for a good period of time, but again this has now restarted. How can I build on the progress that my son makes, rather than relapsing into old habits? As you can imagine, it is rather frustrating to see these supposedly old habits raise their head again.

Also, when my son becomes upset and has a bit of a ‘meltdown’, is it better to keep talking to him to try to calm him down, or is it better simply to ignore it? I’ve had a lot of conflicting advice on this subject.

Thanks for your help

M

Dear M,

Thank you for your email with its very interesting questions. I’m sure it can’t have been an easy one for you to write, but I’m equally sure that your situation will strike a chord with a number of readers of this column, and I hope that the response I give you will be of help to them, too.

You write that your 5-year old son has recently been diagnosed with autism, and whether that diagnosis came as a relief, or otherwise, it must have come at the end of a long period of concern, when you must have wondered what on earth was happening with your little boy, and what could possibly be the cause of his challenging behaviours.

Presumably, though, until recently there had been a period when his behaviour seemed to settle, and maybe you thought he would just grow out of whatever it was that was ‘wrong’. So I can understand how frustrating it must be for you now when he appears to be regressing. However, as I’m sure you have been finding out, autism is a lifelong condition, or, more appropriately, a lifelong difference – attitudes have changed radically in recent times, and ‘condition’ suggests a fundamental flaw, which is not helpful. Your little boy is who he is, and as with every child he needs your support in becoming the best possible version of himself that he can be. Hopefully what the diagnosis will have given you is the recognition that ‘battling’ his behaviour, or feeling challenged by it (as though you have somehow caused it), are both cases of throwing good energy after bad, and at least now you know what you’re dealing with – and it’s not personal.

You don’t mention whether your son is verbal or not, nor at what end of the autism spectrum he is likely to be, and it may be a bit early to know, so I will make suggestions that may sound generic but will hopefully give you material that you can fit to your needs.

My personal practical experience is largely with adults with Asperger’s, a high functioning form of autism, and as they can understand something of, as well as talk about their mental state, I have had some direct insight into the workings of the autistic brain. Together with evidence from research, and the direct evidence of writers such as the extraordinary Naoki Higashida (The Reason I Jump) who is non-verbal, this experience has led me to understand that language works very differently in individuals on the autistic spectrum, and even has a rather different function – all of which helps answer your questions.

You say that you have had a lot of conflicting advice and I’m sure you will have done, especially if any of that has come via that great expert in the sky, the internet. So much out there reads like proper scientific information, whilst in reality being little more than personal (even uninformed) opinion, but it also reads authoritatively and you feel you must follow it. At risk of being authoritative myself though, I absolutely believe that, with the right information, every parent of an autistic child should make decisions that work for their own child and their own family. This is because the autistic spectrum is not one thing, with one appropriate ‘treatment’. It is an umbrella term that covers certain indications and symptoms of difference, which have, as yet, no fully understood underlying cause. The consequence is that there are no universally proven ways of dealing with what may be very differently presenting symptoms.

I don’t write this to imply that you’re in a hopeless position, but rather to encourage you to feel justified in trusting your own judgement more.

What scientists and specialists do now mostly agree on is that ASD is an outcome of differences in brain connectivity – leading to what might be described as different ways of experiencing and interpreting the world. To give you some idea: when you see a crowd of people you experience it as a mass, impacting on you more or less as a single entity, but for your little boy, who isn’t able to combine individual elements into a larger single whole, the crowd is experienced as an overwhelming tsunami of thousands of separate pieces of sensory data. This is scary stuff and the reaction likely to be a meltdown, especially if the language route (available to others as a way of expressing and so lowering distress) isn’t available to him. If language isn’t something that works as an emotionally helpful process, it may end up actually being unhelpful.

So perhaps that helps to answer your second question? Talking to your son may actually be experienced by him as another sensory overload experience – or not, but only you have the chance to observe him at such times. Does he appear to be soothed by it or not? If not, stop talking, simple as that. In fact that word, stop, may be the only useful one. Try saying just that word, ‘stop’, calmly and firmly, and then walk away – not too far, but far enough that you’re not another factor overwhelming his senses. It may work. Ignoring is not usually a very useful tactic with autism, as, unlike with any other child’s temper tantrum he will not be acting out to ‘get at’ you, but to offset the sensory overload he’s experiencing. It’s like an inoculation of stress to achieve destress. He is likely – to some extent- to grow out of such meltdowns, but your best approach is to avoid situations where you know they may happen. Know your child, his triggers and the things he finds soothing, and work with him. He doesn’t like what’s happening to him any more than you do. Do read The Reason I Jump, to get inside at least that one autistic boy’s head.

Regarding your first question on bad habits – again these are unlikely to be attention seeking behaviours, and more likely to be reactions to distress, but you’re right when you call them habits. ASD is more habit driven than neurotypical behaviour. But your question is why these habits have re-emerged now. I’m afraid the answer is likely to lie within the family, and so the remedy is probably a case of you having to do more changing than your son.

What has happened recently? Has there been a house move, a new baby, a particularly emotional family episode? Has your son experienced a particular developmental surge, or some other change in his personal circumstances? Any of these things could lead to anxiety and as he can’t communicate anxiety and distress as others do (and may never do), and as science suggests that he will always be less likely than others to understand his own inner processes, he is going to depend far more on the external structures and certainties of habit, routine and repetitive behaviour for security. And throughout life may return to habits which have stood him in good stead in past crises.

The more routine and certain his life is, the more ‘emotional space’ will be left available to him in which he can mature and develop. Autistic children can achieve amazing things. The proponents of an educational approach called Applied Behavioural Analysis (ABA) believe there is little to hold them back and that consistency, structure and repeated reinforcement of desirable behaviours can rewire their brains to the point of almost normal functioning. I must stress this is a controversial theory, one that has even been called cruel, but you may want to make your own mind up about it.

Ultimately I can’t say exactly what will work for you and your son - because he is unique. You know him best, but, not being ‘an expert’, you may be afraid that you will not ‘do the best for him’. Try to overcome your uncertainty and learn him, as you would the most interesting subject in the world (which he is), then you will be in the best possible position – better than all the experts (me included) – to know how to work with, and for, him.

I hope this is in some way helpful.

It comes with my very best wishes for all your futures,

- Gillian Bridge

Do you have questions that Gillian could help with? Get in touch – Gillian@fyne.co.uk