Diagnosis Story

Most of us resist labels. In an individualistic society we dislike being boxed in, classified with groups of other humans as if our stories are just the same as everyone else’s. Labels can restrict, altering others’ perceptions of us.

ADHD means ‘hyperactive’, ‘troublesome’, ‘difficult’.

Autism means ‘odd’, ‘low intelligence’, and ‘socially awkward’.

I think of the labels I live with. ‘Stay-at-home-mum’ for some means ‘lazy’. ‘Depression’ can mean ‘weak’, ’emotional’, and again, ‘lazy’.

Labels are freighted with associations, and this is why we fear them, because not all of those associations apply to the individual who wears the label.

Yet labels can also bring freedom. Freedom to be ourselves. Rather than always having to hide the things we struggle with, labels allow us some grace. Someone can explain that ADHD sometimes means they blurt out an inappropriate response. “I’m working on it, I don’t mean it personally. Please let me be me, and don’t reject me.”

I feared labelling my son. I did not want people to treat him differently, either by excusing behaviour or assuming negative things about him before getting to know him. But slowly we began to realise that the issues we hoped he would grow out of were not going away, in fact they were getting bigger, and having more of an impact on his life as he got older.

They were also having a greater impact on our family life. His anger is an onslaught, and rises with very little provocation. Far less unpleasant, but just as draining, is his inability to not interrupt, or to wait when he wants something.

Also troubling is the difficulties he has relating to his peers. He shows a noticeable lag in emotional development, and went through a stage of being called ‘annoying’ by all his friends. That seems to have passed, but he still struggles to get involved in games where his rules and ideas are not listened to. He wants control, and gets upset when friends won’t listen.

With high school approaching in September, we realised that he would need help. Homework demands will increase, and at the moment he has meltdowns over a single sheet of maths.

It is intensely frustrating to me that because he shows no educational lag, no one would take us seriously for a long time. If anything he has high intelligence, and is ahead of many of his peers in the classroom. For this reason, the professionals are ruling out ADHD at this moment. I’m not claiming to know more than they do about neurodevelopmental science. But I am an expert on my son. I have observed him, and lived with him, for ten years. I love him deeply. And the autism spectrum disorder which they are leaning towards just doesn’t fit, from my perspective.

Admittedly, he has some traits that flag up concerns – but these all remain in the social development side, and can be exhibited by people with ADHD also.

I’m finding it difficult to convey in brief appointments the feelings and instincts I have. It seems to me that the USA are much further ahead of the UK in terms of research and understanding of these issues, and have broken down ADHD into more streams. Here in the UK we recognise only three. One Dr in the US identifies seven types of ADHD.

Right now I know we have to go through the process. I have to pray, and trust, and wait for the professionals to check every avenue, even if they only rule things out in the end.

But it is my son, and I love him deeply, and I am afraid of them getting it wrong. I am anxious for him. I am anxious for myself, because of the freight of these labels. Autism (even mild) feels terrifying. What will it mean for his future? Will he be employable with that label? Even if it is only mild, and he manages to get to university and gain a first in science? Will it frighten people?

Even ADHD … what will it mean for his long-term relationships? Will anyone want to commit their lives to someone so difficult? So challenging? How will he be with his children? Will he be intensely involved one minute, then distant and engrossed in his work the next?

I know that worrying about the future is unhelpful. Each day has enough trouble in it. I tell my soul to listen to Jesus on this one. The future is in his hands.

But the questions drift like ghosts in the back of my mind. I don’t fully trust the professionals. I feel that the forms we fill in give only a partial picture. And how can a family’s life be condensed into an hour-long appointment?

The educational psychologist will evaluate him in school next week. And right now all I can do is gather information, evidence for what I believe, in the hope that someone will listen.

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