When is the right time to discuss a child’s diagnosis with them?
In recent weeks I have had the realisation that the children that I’m working with are not all aware that they have a diagnosis of ASD. I think because of my previous work as a secondary teacher, where children were all aware, and often quite vocal in expressing what their diagnosis was and what it meant to them, that I just didn’t think that children might not yet have been told.
As a parent I recognise that telling your child that they have a condition that will affect them for the rest of their life must be incredibly challenging - not least of all because in order to tell them this you first have to accept it for yourself. I also recognise that having worked with children with ASD for many years that I have perhaps become somewhat immune to the day to day difficulties that children and parents experience. I think because I see all the children that I work with as individuals who each have overwhelming strengths and talents I forget about the challenges that go with living with ASD - the challenges in behaviour, in making friends, in focusing in the class and ultimately being different in that often very ‘hidden’ way.
Running a group with three children with ASD, one who knows of their diagnosis, and the other two who don’t this question has become very prevalent in my mind. Are we protecting children through concealing their diagnosis from them for as long as possible? Or are we denying them the freedom and understanding that comes with disclosure? We are currently in discussion with parents, and both are petrified of what effect having this very important discussion will have on their child, their relationship and their wider family. Will children be more accepted or will they be shunned for this confirmation that they are indeed different?
The boys I have in mind are aged year 4 and year 5, and struggle to maintain friendships and social connections. Both are isolated and confused as to why children don’t like them or find them hard to be around. The other children recognise that they are different, but because as staff we can’t name the elephant in the room, children continue to be cruel and misunderstand their actions for weirdness or nastiness.
As an educator I’ve seen children be horrible, and I know the reputation that children can often have as being unkind. On the other hand I have also seen how incredibly compassionate children can be and often are when they realise that someone is different and struggles. I have rarely seen a child be horrible to a child in a wheelchair, or a child who has an obvious disability - children are not as cruel as we as adults often feel they can be. Interestingly in the same class as one of the boys concerned is a girl with severe autism - she’s non verbal and behaves in a stereotypical autistic way. Children are extremely compassionate towards her, never ridicule her and always offer to help her or staff when she’s around...but yet to the boy who has the same condition but suffers differently they tease, bully and ridicule. Getting to know this class and the characters concerned I know that if they thought for a moment that they were teasing someone with a disability they would be heartbroken. Every time he has an altercation or winds up in yet another awkward position we as staff are helpless to stop it from happening because he and his peers are all in the dark and it is not our place to enlighten them.
Both boys recognise that something is up, that they are different and that they lack understanding of certain situations. It seems that they are both coming to a point where they are starting to try to form their own theories of what it is that makes them different and these theories seem to consist of blame and self-loathing.
So when is a good time to discuss diagnosis? When should parents be prompted to begin the process? I’d be really interested to hear about how it was for you and your family. How old was your child when you disclosed to them their diagnosis?