One of the things I have often heard said – that never fails to wind me up – is that when a child with autism is born, professionals will often say `you need to grieve for the child you should have had`. Ok, there are so many things wrong with that I am not sure where to start. But first of all let me say – I don’t necessarily blame the parents – I think if you are a professional and you have any kind of understanding of your job, you should know that this not a good thing to say to parents. Obviously the parents have had an idea of a child in their heads for some time before it was born; what their child will be like, things they will do with the child, and what it will go on to achieve. And of course it is going to take some time to adjust to the fact that the child isn’t the person they`d imagined in their head. – But here is a little list of why the term `grieving for the child you should have` had is so wrong:
- The term `grieving` is usually applied to somebody who has died – of course you might say `you need time to adjust to this, read up on it and get yourself used to the idea` but in my mind the idea of grieving for a child is something reserved solely for if it dies. What this does is put the idea of a diagnosis of autism on a par with the death of a child.
- Another fact is that grieving for the child you should have had implies that you won’t be able to do any of the things you had hoped to do with thischild. And that it won’t be able to achieve or fulfil any of the things you had hoped it would. Basically, the professionals are telling you `your child is autistic. Abandon any hopes you had for it. `
- There is no `child you should have had` – you got pregnant, you had a child, that`s it, end of story – it wasn’t like you had a child who died, and then someone snook in and replaced it with a living child who was autistic. The so-called child that you are grieving for is a collection of thoughts and expectations from your own mind. You are basically grieving for the idea of the perfect child – a child who never existed.
- When professionals use the term`grieve for the child you should have had` in my mind they are doing nothing but affirming all of the negative stereo-types and stigmas associated with disabilities. If the parent doesn’t have any particular knowledge of autism, they are only thinking of the worst- case- scenario, which probably isn’t anything like the reality, and therefore the professionals should be confirming that the child can still lead a happy and normal life. Whereas when they talk about `grieving`, all they do is increase the negative beliefs that exist around disability.
- A diagnosis of autism should be turned in to a positive thing as far as I am concerned; now you know what is going on you can make steps to – not curing – but minimizing the negative impact of autism. It shouldn’t be used as an excuse to make the condition seem worse than it is. Grieving for the child you should have had basically makes it sound like parents should sit there wishing they`d had a `normal` child.
- Parents are emotionally vulnerable at this time – they might not be in possession of a lot of facts about autism. They need to be reassured and have things explained to them. They probably don’t understand how highly offensive what they are being asked to do is. In my mind, you are comparing me, and what I have going on, to the death of a child. You are saying I am not the child my parents should have had, that I cheated them, and that they need time to get their heads around the fact that I`ve been born, rather that the child they were supposed to have. Apparently my very existence is so offensive that it needs a period of mourning.
I can`t speak for everybody with autism when I say this is offensive; I am speaking from my own point of view. But I can tell you that there are not many things that I find offensive. Obviously I don’t like things like racism, and I may get upset or angry about it, but that is not the same as being personally offended when somebody insults me – but when people talk about grieving for children they should have had, I do get offended. But I stress again that I do understand that parents may have no idea how offensive this may be. Yes it annoys me, but I am not blaming them – they have been given terrible advice and they didn’t know that they shouldn’t take it. I hope that if you read this blog and you are one of these parents, you won’t be offended, but rather you will take on what I have said, and that you will try to use it to perhaps get a better understanding of why I am so offended by this concept.
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