There is a current discussion about whether we should say someone has autism or is autistic. I have used both terms interchangeably.
As parents, we are advised to ask an autistic person about their autism before we make judgements about our own children. So, over this weekend, I did exactly that and consulted those people with autism closest to me.
I asked my boys which term they would prefer to use or be known by. I also made it easier for them to understand by saying, if someone asks you why you have or had one to one support in school/college, what would you tell them? Would you say I am autistic or I have autism?
Benjamin (20) firstly said ‘I am Benjamin’. Then, ‘I am Benjamin and I am a musician’. But if pushed to add a bit about autism, then, ‘I am Benjamin, I am a musician who has autism’. He wants to be known as Benjamin. To him, he is not defined by his autism. He also said ‘maybe it’s why I learn music so fast’.
Thomas (20) said. ‘I was autistic when I was a young child, before I could talk . But I did ABA and now I only have a bit of autism so I am Thomas with a bit of autism’. He explained that some of the young people he is at college with are non verbal and have severe behaviours. To him, they are autistic. He himself has ‘a bit of autism’. So, to Thomas, the word autistic means a more severe form of autism.
H (17) said he would try not to mention autism at all to people. He does not want to be reminded of it. It is not a label he wishes for himself. He also answered my question by saying they mean the same thing and it’s the way you say it that matters.
We don’t discuss autism much with Marcus (10). He, like his brothers had seven years of one to one teaching from ABA tutors who he loved. So, he does know he required help to learn to talk but as his brothers did too, he does not feel different in any way. He said ‘before the tutors I was autistic but now I just have a little bit’.
I think my boys equate autism with not being able to talk. To them, that was their biggest hurdle and now that they can talk, autism is no longer an important word to them.
It is so much easier now that they are verbal and are starting to being able to explain how they feel about themselves and how the world appears to them.
They do not see injustice. They do not think they are not accepted. They are so accepted by everyone around them. They are loved by us of course but also by the many people who they have been involved with in their lives. Ex tutors, teachers and carers still come to visit them and to stay in touch. The boys have not only changed their own lives but those around them.
I think the awareness/acceptance is also for us as parents. Managing the things the boys do not know about. The battles for their education, the tribunals fought to get funding for ABA, to get everything they need on their EHCPs, to find the right schools and colleges. To battle social services to get payments for carers to take them out, to choose those buddies with care so that they are friends for the boys and not just people who need a job. The constant organisation of their lives to ensure they are busy and fulfilling their dreams. This all happens behind the scenes for my boys but this is what people need greater awareness of. That, in order for my boys to lead happy lives, so much support and funding is needed. We, the parents, are also battling prejudice on behalf of our boys.
I would like to think that one day, it may be my boys standing up to tell the world about autism and not me, their mother. I may have the ability to write but they have the gift of being able to tell the world how it really is.