Am I the mother of two children or the mother of two autistic children? Do I label my children autistic or do I not label them at all? As a non-autistic mother do I even have a right to label my children?
As my children’s parent, of course I have the right to label my children. My children depend upon me for love, security, education as well as their general well-being. But beyond these general aspects of parenting are the extra responsibilities of bringing up children who are currently unable to understand their difficulties and who need help to regulate their behaviour.
Maybe, one day, this heightened dependency upon me will lessen as they progress into adulthood and develop their ability to manage their own lives. At that point they can, hopefully, decide what aspects of their identity they wish to use and I will respect them for that and follow their lead. At that point I will take a back seat. But until then, my children are dependent upon me to help them cope with the world around them, they are dependent upon me to seek the education and support that they both need.
To get that support has meant that I have had to label my son as having an autistic spectrum disorder and my daughter as aspergers. Labels were forced upon me through need but they helped us to secure the right education for our son and are currently helping us to fight for educational support for our daughter.
But labels also protected us as well.
When my son became unwell and a school refuser, his autistic label protected him from claims that he was a truant and us from claims that we were negligent parents, claims that could have led to court action. His autism helped the authorities to understand that my child required support, not condemnation. It also stopped us being blamed for his behaviour as was the tendency in the years prior to his diagnosis and helped us to look for targeted support for him and us.
As a result we then started to experience a sense of community as we met other parents of autistic children in our town and on online. Labelling made us feel part of a community whereas once we did not belong to any community, ignored as we were because my children do not meet the social norms expected by many in our society.
But for all of the positives, I am also mindful that labels can create wrong assumptions and negative responses.
And autism and aspergers are no exception. As is often the case, the stereotype of autism created through the epic ‘Rainman’ has contributed to a limited understanding of autism. Many people fail to see that the autistic spectrum is just that, a spectrum, with autistic people exhibiting varying degrees of difficulties and behaviours (and I hasten to add strengths). Many people also fail to realise that aspergers is also a form of autism and as for females with aspergers there is even less understanding amongst both professionals and the general public.
Such ignorance has been made painfully aware to us in the form of rude comments or long stares made by members of the public towards our son and to a lesser extent, our daughter. But that is nothing to the harrassment and bullying that has been targeted at my son by local teenagers in recent times. It seems as though he has become popular for the wrong reasons; easy prey for the teenage predators who get a kick out of humiliating him with verbal insults.
Against this ignorance it may not seem a good thing to embrace the labels of autism and aspergers and expose my children to the risk of bullying, harassment or even disability hatred. But to withhold from my children the information that can free them from a lifetime of feeling different without knowing why seems equally cruel and denies them the opportunity of support and understanding. It also potentially exposes them to a lifetime of low self esteem, a lack of confidence and more serious mental health problems as well as the potential for substance or alcohol addiction.
But for all of this I still have to navigate a society that is anti-autistic. I have to find a way where my children don’t feel undermined by negative thinking whilst helping them to feel good about themselves.
In this regard, I am select about how I use their autism and aspergers labels. I only use their labels to explain their difficulties whenever the need arises; whether it be helping our children understand a particular difficulty they have or to help others such as teachers and support assistants to understand our children’s needs.
We have no need to keep on reinforcing their labels to them because in our family our children are loved and respected for who they are - no less, no more than you and I.