“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 disappointment 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 someone like my daughter can talk or doesn’t have a learning disability that she doesn’t need support. They don’t see that below the surface of apparent normality lie hidden difficulties that can make a person’s life incredibly difficult.
Just because my daughter can talk, look or even smile at someone does not mean she isn’t struggling. Just like many girls with aspergers she 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. Just like everyone else on the spectrum, 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 non-verbal cues and the language of others that she has been unable to form any meaningful friendships with her peers. But her difficulties extend into other areas as well Sensory difficulties make certain smells, tastes, sounds and textures abhorrent and new experiences cause her anxiety and then there is the debilitating exhaustion she experiences when overwhelmed with the world around her.
But because she is articulate and can become very animated about the subjects she is interested in, many people 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 around her 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 parents we can see how hard our children’s lives can be as we often experience the fall-out at home; a consequence of a day in a busy school environment where there is little support or understanding of asperger syndrome. Even if we discuss our observations with school it can have little affect because schools can be insistent that there is nothing wrong based on what they see. If they don’t see any obvious autistic behaviour then those who are passive often get ignored. Not surprisingly, children like my daughter are forced to struggle on their own until such point that they simply can’t carry on any more and end up suffering emotional and mental health problems. And as I am finding, when an autistic child has these additional difficulties then the challenges are compounded further.
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. If only that was the case. The reality is that for many people such as my daughter, asperger syndrome is a very real and 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 and help that these people need. Hopefully then we will prevent the emotional and mental health problems that invariably happen to people like my daughter.