Is my son disabled or not has been one of the biggest questions that I’ve had to tackle over the last few years. It all started at the time my son developed mental health difficulties shortly after his diagnosis of an autistic spectrum disorder in 2008. Encouraged by our consultant to apply for disability living allowance (DLA) for our son, I was suddenly faced with the issue as to whether my autistic son was also disabled. Having grown up with the idea that disability was a physical impairment, and having grown up not knowing anything about autism, I now had to rethink my understanding of disability.
My dilemma was not helped by the application forms for DLA whose questions were biased towards obtaining information about the needs of someone with a physical impairment. Questions that asked for a specific number of hours that my son required assistance were difficult to complete due to the unpredictable nature of my son’s condition.
However, not one to give up and encouraged by our consultant, I submitted additional notes describing my son’s difficulties and the support he required. However, the process of applying for DLA was depressing and draining. Not only was I confronting the reality of my son’s impairments but it also confirmed to me that I had to label my son as disabled in order to get him the support he needed.
Still, there were times when I felt a fraud going through this process. The fact that the DLA forms were aimed at physical impairments made me feel as though my son’s autism and mental health difficulties were not a disability. I started to think that the state did not see those with hidden disabilities as disabled.
But this is the general attitude in our country. People don’t see autism or mental health issues as disabling. With nothing tangible to look at, many people assume that a bit of social anxiety or depression is not a disability but rather something of their own making which can easily be put right through self determination or medication.
They fail to understand that autism and aspergers are life-long conditions that are not remedied by any of these things.
With my son, many people do not see the boy who can’t leave the house, who looses the ability to communicate and reason, who fatigues easily, who becomes easily distressed by change and who covers his ears because of sensory pain. They rarely witness the full extent of my son’s difficulties because he is often unable to leave the home when he is having a bad day. Instead when they do see him, they see a boy who talks animatedly about lego or x-box games which to them is sufficient to deduce that there is nothing wrong with him.
But on the occasions that they do witness his autistic behaviours their ignorance is apparent in the crass comments that suggest that my son is a social deviant or the product of poor parenting. Such hurtful comments only goes to undermine me and my family and deprives my son of the support and understanding he needs
In a way though my son is not disabled. Yes, he is autistic and he is unique and different and has many challenges but he is not necessarily disabled. In our home and within our family we have adjusted and adapted our lives to include our son who in many ways is just an ordinary boy and teenager. We don’t see him as a disabled person.
It is society that has made my son disabled.
Poor education has exposed him to mental health problems and the risk of unemployment and poverty in future life, ignorance has led to bullying and social exclusion, the physical environments of buildings makes it difficult for him to enter shops, restaurants and cinemas due to the noise or lighting or the layout of the place. I could go on but the point is that ignorance about the autism spectrum have acted as barriers to my son and made it difficult for him to access the things that many of his peers take for granted.
His chance to become the best he can be and to play a full part in British society has been compromised and from this perspective I can see that he is disabled.
However, within our family, our son will always be our beloved son and brother not someone who is defined by their disability.
This post is day 4 of the nablopomo challenge.