“Your daughter will not require any support at school. She is only mildly affected” were the words of the clinician who confirmed our daughter’s aspergers diagnosis last year. I wasn’t in a place to challenge those words at the time, having been told for the second time that one of my children was on the autism spectrum. The shock that I felt at the time had stunned me into silence but now, having had over a year of adjusting to my daughter’s diagnosis, I can see how wrong and unfair those words are.
Aspergers isn’t necessarily mild and to say that it is suggests that the condition has little impact on someone’s life. It may be less severe than those with more classical forms of autism but this doesn’t mean that people with aspergers don’t face challenges in their daily lives. Unfortunately many people assume that because my daughter doesn’t have a learning disability that she doesn’t need support. They don’t see that underneath the surface lie hidden difficulties that can make her life very difficult.
Like many girls with aspergers my daughter has learnt to mask her difficulties and almost pretend to be someone she isn’t and it’s because of this that people often assume that she is like any other 11 year old girl, except she isn’t. My daughter has a lifelong condition defined by a triad of impairments in social communication, social interaction and social imagination. In other words she is autistic and has difficulties understanding and getting along with other people. Such is her difficulty in understanding the language and behaviour of others that she has been unable to form any meaningful friendships with her peers. But her difficulties extend into other areas as well. She struggles with change and prefers to stick to familiar routines. Sensory difficulties make certain smells, tastes and textures so abhorrent that she prefers to eat the same old food stuffs and her dislike of crowds and noise can be so overwhelming that she prefers not to go anywhere. Then there is her unique sense of hearing which means she can hear the minutest of sounds (the buzz of insects in a summer garden, the ice cube machine in a busy café).
In a world that is so sensorily sharp and where people’s behaviour doesn’t make sense, I’m not surprised that my daughter becomes so exhausted that she hides away in her bedroom. It’s how she copes with living in a noisy, frantic and confusing world. Many people don’t see this however. They see a girl who is articulate and can talk animatedly about certain subjects. They see a girl who says her pleases and thankyous and smiles ever so nicely. From this they assume that she is capable. The problem is that they often assume she is more capable than she really is and don’t realise that the social and physical environment can drain her so much that she struggles to function properly. In a busy school environment this means that her ability to learn is impaired but because her difficulties are more outwardly subtle she is often dismissed as being ‘mild’ and not in need of extra help at school.
As a mum, I can see how hard my daughter’s life can be as I see the fall-out at home as my daughter lets go of the anxiety and anger that has built up during a day at school. It’s hard to see and it’s even harder to do anything about because much of what happens is linked to her day at school. No matter how hard I try to alleviate her anxieties, at the end of the day you have to correct what’s going wrong in the classroom and that is something I have little control over. All I can do is to share my concerns with school and hope that they will listen and take note. Unfortunately being open with the school has had little affect as the school have insisted that there is nothing wrong with my daughter. It seems that if they don’t see any obvious autistic behaviour then everything is fine and there is no problem. If only they saw what I saw. If only they really understood asperger syndrome.
Unfortunately they don’t understand enough and many children like my daughter are forced to struggle on their own until such point that they simply can’t carry on any more. They can become too exhausted, run down, depressed even, to continue with school and as I have found, when an autistic child has these additional difficulties then the challenges are compounded further.
The point is this. If we are serious about improving the quality of lives of those with an autism spectrum disorder then we need to stop stereotyping them. Too often I hear people demeaning asperger syndrome as a fashionable diagnosis or even a lifestyle choice or merely a description of someone who is highly intelligent but with some social angst. The reality is that for many people such as my daughter, asperger syndrome can be a debilitating condition that can be made worse by their awareness that they are different from their peers. It’s time that we stopped describing aspergers in a way that minimalises their difficulties and provide the necessary support that these people need. Hopefully then we will prevent the emotional and mental health problems that can happen to people like my daughter.