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Rhonda Valentine Dixon

The Horrid Things that Happen to Families Living with Autism

I was asked my opinion of a news article in which it was reported that an Aussie TV star’s loved ones were experiencing dreadful challenges with their autistic child. Here is my response. The reporter said the family may have to give up the child. In my opinion, if they give the child up to Child Protective Services, (Dept of Child Safety or whatever it calls itself these days – it changes with each new minister) they are giving up a child whom they say they love, to a life of possible mishandling and potential abuse in a broken system. What in the world makes the family think that workers who are employed by Child Protective Services are going to help their child when they haven’t been able to themselves? I understand they are burnt out. But that Dept. is not the answer. When I was helping families negotiate the system fifteen or so years ago, care houses were set up by people who I imagine may have had good intentions or, conversely, they may have been ‘in it’ for the money and possibly thought ‘how hard could it be?’ Tenders were asked of the care houses by DOCS. Who could look after the child for the lowest amount of money? It didn’t matter to DOCS if the child was classically non-verbal potentially violent autistic – they could just knock him into shape, right? (I’ve seen this type of thinking happen.) It didn’t matter to DOCS that a tender was offered from a home where there were children already in residence who came from horrendous backgrounds where they were abused and had become abusers themselves. With different people ‘caring’ every eight hours, who was likely to know if a child was being abused – and what if the abusers were carers themselves. It is a dreadful and broken system and I don’t imagine it is any better these fifteen years down the track. It also needs to be said that the carers in the care houses are often good people. But they burn out because they aren’t adequately trained and it’s a damn hard job. Others treat it like any other job. Sit with a child like any regular babysitter would; play on their own device while the child is watching the telly. I knew of one guy who used to watch Big Brother with the children in the care house. Big Brother, in my opinion is the last thing I’d want vulnerable kids watching. Particularly autistic kids who might conclude that the debaucherous behaviour of some of the show’s participants was how one behaved or should behave in the real world.

Interestingly, the figures of deaths of kids in these care houses are not recorded on the Child Protection website. In fact, the website talks about how many kids received services last year and that the great majority of them, where abuse was substantiated, were children subjected to emotional abuse. Don’t rely on Govt to tell you what you need to know – how many abused kids are abusing other kids in care houses? How many families of autistic kids are in crisis and have to give up their child because they can’t cope. How many care houses are autism specific with highly trained staff and home owners. The list of questions goes on.

An adult female on the video I was asked to view said to the boy that he had to wait. She spoke patiently. However, she didn’t say what he had to wait for. It isn’t necessarily instinctive to an autistic child why he must wait.  And what is ‘wait’ to an autistic child anyway? Does he understand that ‘to wait’ involves the concept of time and that in this instance he can expect something to his liking should occur at the end of that length of time? It is all too abstract for a child who hasn’t been taught to understand our world. The woman didn’t say anything other than ‘you have to wait’. No wonder the child is so anxious that he’s lashing out at her and having violent meltdowns. I suspect, based on the little bit of this family’s situation that I have seen that the parents have not taught the child to trust them. (This is the sort of trust I’ve talked about endlessly before – it goes beyond the trust a child acquires that the parent will be there for him when he gets home from school, that the parent will feed him and tuck him into bed at night.  It is the trust you must teach the autistic child that you will translate the entire world for him.)  I suspect, based on the little bit I have seen of the family that they do not translate every single aspect of this confusing world for their child. He needed a comprehensive intervention right from diagnosis. He needs comprehensive intervention now. He sure as hell doesn’t need to go into the shocking DOCS system (which lies by omission because it doesn’t print the statistics of the children who die from abuse or suicide in the system’s care.)

Loving autistic children alone does not help them. Intervention by highly trained professionals can help them lead a constructive life. Simply loving an autistic child and hiding him away from the world to protect him from it and the world from his violent meltdowns does not help him and it doesn’t help you (as the parent.) Hiding the child away because you are embarrassed about his inappropriate behaviours is no help either. In fact, it is doing the child a major injustice. And in the case of the article, I was asked to give an opinion of, I notice the siblings were dreadfully adversely affected as well. They may even have PTSD. The parents were in over their heads because they clearly did not put the very hard work in when the child was diagnosed.  They needed to learn how to recognise the child’s triggers.  They needed to learn how to translate the entire world for their child.  And I do understand that the fact they didn’t is not necessarily their fault. They may not have known the implications of not accessing early intervention or they may not have been able to afford it at the time. The medical profession may not have told them that they needed to access intervention immediately.  The family may have thought they would cope and love the child regardless.

In Qld, if a child is taken by the system YOU CANNOT GO TO THE MEDIA if you perceive he’s being ill-treated in that system. The ordinary media, like in the presentation of the report I viewed, is useless anyway. What I saw in this report concentrates on the ‘bad behaviour’ of a horrendously behaved kid in a nice respectful family. It doesn’t address the real issues at all; that the family is in crisis because it doesn’t know how to help the child; that the child doesn’t understand the world he lives in and when he lashes out his mother runs away to protect herself.  I loathe media people who sensationalise a tragic situation and report it inappropriately.

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