As part of my campaign to raise awareness and acceptance of neurodiversity, here is a piece for all the parents struggling to get a diagnosis for their child. If this speaks for you or someone you know, or you’d like to help with awareness, please feel free to share.
“Not labelling” something doesn’t make it go away. It gives it a different label. Lazy. Scatterbrain. Weirdo. “Labelling” it doesn’t jeopardise her job opportunities, or her friendships. Leaving it undiagnosed and unmanaged does that. Naming a problem, defining it, helps us to understand it and find ways to manage it, to seek support. How can we raise awareness and remove stigma, how can we dispel myths, how can we even talk about the positive attributes and build self-esteem, when the very doctors are ashamed of it? I understand you want the best for every child, but to fear to “label” is not going to do that. It is to deny their reality, they live with it every day of their lives. It is to deny them the right support, and to continue the ignorance and bullying in the playground and in the classroom. How can we educate children to be compassionate, to be be accepting of difference and diversity, when we can’t even come out of the closet? And those classmates may be the ones who you fear someday will turn down her job opportunity. If we can’t talk openly we can’t remove the stigma. Dyslexia is out in the open now. People understand. Accommodations are made. And the world’s a better place for it. Why should it not be the same for other neuro-developmental issues? Refusing the “label” means it’s a struggle to get help. What was it like for short sighted children before we understood they needed glasses? How isolating must that have been? Why are parents not listened to? What agenda do you think we have? Why does the struggle for diagnosis go on for years, and years? See you in another 6 months, I know that seems like a long time, you say. Yes it is a long time. It was 6 months since we last saw you and 6 months before that, and you’re looking at your watch, and nothing has been done. We’ve tried all the strategies you hastily suggest, we’re way ahead of you. If you think that’s going to work you don’t understand the problem. Yes, she’s achieving at school, because of the massive amount of support she has at home, and the huge accommodations and sacrifices I make in our family life to ensure she can cope at school. Because she makes a supreme effort at school and because she can compensate for the time being with her high intelligence. She knows I’ve got her back. And I come to you now before she goes to high school, because I know how the work load will increase, the expectations will increase, and I will not be able to prop her up to the same extent. What makes you think school will offer support without a diagnosis when even you suggest I withdraw support, to let her fail so that she can learn to be independent? I’m sorry, did you say let go of her hand when she can’t even walk, and watch her fall flat on her face? Don’t you think I have tried to let her stand on her own two feet? Why do you think I am here talking to you now, when I can see that she is not capable of that? I would love for her to be more independent. Do you know how stressful and tiring it is for her to hold it all together every day? When she comes home there is no time and energy and focus for her to take on responsibilities. Her school life is prioritised, learning life skills at home goes at a much slower pace. Do you think I am not capable of judging my own child’s needs? Pardon, did you say school know her best? A teacher who has known her a month amongst a class of 30 is a more reliable judge of her attention? Do you know how much goes on in the classroom that the teachers don’t see? The look on my child’s face when you told her she doesn’t have attention problems. She doesn’t have problems understanding when people don’t understand her. That’s for sure.
And just a final thought. If you don’t like the “label”, then why not change the name?