The original title for this series of pieces on life with autism was ‘How Not to Have Autism Done To You’....as opposed to the more conventional ‘How To Do Autism.’ The reason I originally chose that title was that the biggest part of our story by far lies not in what we have done but in what we have endured at the hands of those employed to ‘do’ for us.
I toned the title down a bit because, as has so often been the case in the course of my son’s life, I had a vague sense that I ought somehow to behave myself...be a bit less of a renegade, a bit less of a revolutionary. It’s a sort of vague, foggy feeling that swirls around me whenever I am overcome with the desire to tell the truth about our experiences.
It’s not a rational thing and I know where its roots lie. Firstly, it’s said that fact is stranger than fiction, and I always had a deep-seated feeling that if I ever wrote a detailed account of our actual experiences no-one would believe it on the grounds that surely it couldn’t have been that bad. But it was and, moreover, it has become increasingly clear that our experiences are in no way unusual.
The second reason, and this is also shared by many other parents, is that in the arena of disability the concept of the ‘good’ parent is subtly transmitted to us all the time and the message that comes across loud and clear is that ‘good’ parents have neither renegade nor revolutionary tendencies. ‘Good’ parents are quiet, ‘good’ parents do not kick up a fuss, ‘good’ parents do not rock the boat.
In this ‘Letter from the Frontline’ I want to explore this concept of being ‘good’ in relation to both parents and professionals because I believe there is so much inherent irony and hypocrisy contained within it.
In the common-sense world of everyday reality I think most people would agree that a ‘good’ parent is one for whom their child’s best interest is paramount and who actively and continuously ensures that this is manifested in every aspect of their child’s life.
The problem is that in Disability Systems Land this same definition can just as easily equal ‘nightmare parent’, as many of us find to our cost.
This irreconcilable paradox occurs because both the ethos and the actuality of the systems and structures that pervade disability provision are not remotely meeting the best interests of many of our children. This often means that any parent who speaks up or agitates in any way for provision that does meet those interests comes into direct conflict with those who have the power to define them as ‘nightmare’ or ‘not-good’ parents because of their actions.
It’s a crazy, schizoid situation. How can we be both simultaneously ‘good’ and ‘not-good’ parents? The answer lies, of course, in that power to define. To illustrate just how effectively that power works let’s employ ‘turning things around’.
Let’s take examples from my own experience...things like being very late for appointments or even forgetting them entirely...or taking months to submit important paperwork relating to my child’s support and wellbeing or perhaps ‘losing’ vital information regarding that child. And no, I don’t mean me. I’m not the culprit.
During the course of various city-based psychological or educational assessments of my son I have driven for nearly two hours to either...
a) Wait for up to an hour to see the appointed professional.
b) Arrived to find they were absent because our appointment had been forgotten.
c) Arrived to find they had actually left the country without telling me.
(And by the way these are all different incidents from any referred to previously.)
I have also often waited months for necessary and urgent G.P letters and, on more than one occasion, the Dept. of Education has ‘lost’ my son’s file resulting in me having to re-supply all his extensive paperwork.
My definition or judgement of all those concerned (which for the sake of propriety I won’t detail here) carries no weight whatsoever, for I am only a parent BUT let us imagine that these incidents (and they are only a few amongst very many) were the other way around...Let us imagine that it was me who persistently arrived hopelessly late, forgot appointments or left the country without having the courtesy to notify the professional concerned. Let us imagine that I was required to submit important paperwork regarding provision for my son’s wellbeing and that I repeatedly failed to do so for months at a time (despite reminders). Or, worse, that I repeatedly lost it!
I would be labelled and recorded as a ‘bad’ parent, probably worthy of the attention of social workers, but where do we, as parents, hang the labels and record our judgements on these professionals who, frankly, really aren’t?
Well, personally I am hanging mine right here on my website but I think you can get the gist of the point I am making about hypocrisy. What is good enough for them is definitely not good enough for the rest of us.
This concept of being ‘good’ is really just an extension of the ‘cloak of invisibility’ that I have written about previously where all onus and attention is on parents whilst none at all lies on the professional. Or, as one parent said to me today...
‘The requirements for us absolutely suck.’
And it’s true. The entry of disability into the home often coincides with the exit of any expectation of normal privacy, or at least the kind of privacy that ‘normal’ families enjoy. Routine appointments and assessments are often peppered with personal questions regarding family dynamics and interactions and regular home visiting is often the taken-for-granted norm. Whilst the purpose of these may be necessary and the ethos well-intentioned little thought is ever given to the inherent intrusiveness of these processes. To quote another parent...
‘It’s like being in a goldfish bowl’.
The best way to understand this is to look at the issue through the eyes of a ‘normal’ family. How would they feel if they had to give regular accounts of their intra-familial dynamics? Or to have professionals coming into their homes on a frequent and regular basis? If the government brought in a ruling tomorrow enforcing such measures there would be an outcry on the grounds that the basic human rights of the family to privacy and autonomy were being violated but if parents of disabled children object they can all too easily be labelled as obstructive or having something to hide.
I’ll just give one example here of how easily the justification and intention of best interest can tip over into invasion.
When my son was about six we had a home visit from two local professionals advocating the benefits of a ‘Sibshop’ course that was being run by the local service provider, my daughter being ten at the time. The ‘Sibshop’ is intended to provide a support space for the sibling of the disabled child, clearly a very worthy and potentially beneficial idea BUT...at this visit I asked questions about the staff and activities involved. The home visitors explained that the Sibshops were run according to an established system and produced a file for me to look at, open at a page containing interesting looking group activities for the siblings to engage in. All well and good, then I turned over the page where I found instructions to the facilitators working with the children. These instructions told facilitators to subtly introduce questions into the conversation surrounding the shared activities. I didn’t bother reading beyond the first one that caught my eye...
‘Do your parents argue over your disabled brother/sister?’
This was explained as ‘creating a situation where a problem the sibling may be experiencing in relation to disability in the family could be raised and explored.’
Well fine, then let’s also have this same principle applied to ‘normal families’ and particularly those of the professionals who are implementing these highly unethical situations...or do they never argue?
Parents of disabled children are judged and scrutinised at every turn as I know only too well from having been on both sides of the fence...listening to the comments of other teachers, educational psychologists and therapists when I worked in schools and reading the (wildly inaccurate) comments about me and my family when I accessed all my son’s records under the Freedom of Information Act.
The parent who said that requirements for us suck is right, parents are all too often unthinkingly judged and found wanting, despite the fact that they may be giving their all 24/7/365. I look at this particular injustice in greater detail in my article entitled ‘The Dynamics of Disability’ which is also on this site if you’d like to have a look.
And far too many parents experience the professional assertion that ‘there must be something wrong at home’ as an explanation for an unhappy or behaviourally difficult child who is, in reality, reacting to an adverse institutional factor.
Numerous parents have recounted these kinds of experiences to me. Like the parents of the special needs child who was exhibiting adverse behaviours which were attributed by her school to ‘trouble at home’. The child eventually revealed to them that she was being molested by another child in the school toilets. Or the parents whose adult intellectually disabled daughter was getting on a bus taking her away from her Day Centre instead of to it because of her unhappiness there. Even though they had notified staff of the specific causes of their daughter’s distress they too were inevitably labelled as having ‘trouble at home’.
But woe betide the renegade parent who speaks out and speaks up when a professional is not being ‘good’...into the naughty corner and onto the file!
The sad thing is that when we do find a professional doing their job competently and compassionately, and there are a precious few of them, we are quite pathetically grateful.
We are ‘good’ because we love our children and we will generally move heaven and earth for them. Let us never forget that professionals are both trained and paid to be ‘good’. Their quality of service is our right, it is not our privilege.
Gaia Charis...April, 2010.