The New Zealand government is currently asking for submissions from the public, on the topic of vulnerable children. “Vulnerable children” is a very broad grouping, which includes abused, neglected, and disadvantaged children; “disadvantaged” includes children who are living in poverty, and living with disabilities.
The charity Autism NZ is submitting their own response to what they consider to be the most relevant questions for autistic children, posed by this government “Green Paper on Vulnerable Children.” You can find the Green Paper website, and all the questions they are seeking input on, here. Autism NZ’s response, can be found here (pdf). I found their own response was quite good and adequately covered a lot of my autism-relevant concerns, but I specifically wanted to add some thoughts to their answer to one particular question.
Autism NZ has asked people to share their comments about their submission (information about how to do so can be found on Autism NZ’s website, here). I have sent them my comments for their consideration, and thought I might as well share them on my blog too.
My submission, sent to Autism NZ:
I would like to submit further comments for your consideration, under the following Green Paper question:
How much monitoring of vulnerable children should the Government allow? Who should monitor vulnerable children and under what circumstances?
The monitoring of children with disabilities, must be performed by people with relevant knowledge of, and experience with, the child’s disability.
For example, a condition like autism exhibits behaviours that have historically (and are still sometimes) mistaken for a simple lack of discipline on behalf of the parents. The exhaustion and desperation of the parents can also be mistaken as a problem wholly with the parent, rather a problem that has arisen out of lack of information and lack of support for that family.
It is vital that any monitoring of families like those with autistic children, is performed by people who can identify the causes of problematic behaviours with a background knowledge of the condition, so they can identify what can help the child and parents, and not make the situation un-necessarily and avoidably worse for all members of that family.
It is not uncommon for parents of autistic children to fear that the behaviours of their children will be misinterpreted in such a way as to not just leave them victims of unjustified condemnation and social isolation, but also fearful that their child will be removed from their care. In order to encourage parents of vulnerable children to seek support and advice, it is vital that they not fear losing their child. It should be made clear that the priority is to keep the child with their own family, and that difficult behaviours will not be presumed to be the result of abuse and neglect.
The parents of autistic children are well-known for being dedicated parents who will do anything and everything to help their child, financially and emotionally. This desperation can in fact leave the family even more vulnerable; open to abuse by those who offer unproven or false and expensive “cures” for the child’s condition. This extra layer of vulnerability can be addressed by providing information and support as close to the time as diagnosis as possible. Merely monitoring a family – without the accompanying provision of information and support – is arguably unhelpful, and often anxiety-inducing.
It needs to be understood that the very act of monitoring an autistic child can be anxiety-inducing and extraordinarily upsetting for the child. Having someone new in the home, who perhaps says the wrong words or knocks the wrong item in the house, can set off meltdowns that it may take the parent literally hours to ameliorate after the visitor has left. In order to counter-act this, it would be well advised that anyone intending to visit the family to monitor or assess the situation, be informed beforehand of how best to come into the home, and be very mindful and respectful of the parent’s instructions about how to be around the child.
For the same reasons, frequent visits from a multitude of government departments, is unhelpful and can make the family’s life more difficult than it already is; limiting the number of visitations required to assess needs, may be in a family’s best interests. (This will obviously be relevant to the question of government inter-department co-ordination.) Thereafter, it may make sense for any monitoring or raising of concerns, to be done via the specialists and therapists that become part of the family’s daily / weekly life. Again, this avoids a multitude of visitations and saves time and money for the government.