A few weeks ago I had confirmed to me what I have known for the past 9 years. My son is 11 now and after a long road of meeting with school and CAMHs waiting lists he has received a diagnosis of Autism Spectrum Disorder.

I don’t know why they call it a disorder. For me it just makes him even more remarkable. I suppose for some people it would be. Some people have a more obvious case than my son. They have delayed development, may not communicate ever and it could be obvious to anyone who meets them that they have a “disability”.

For my son he has an extraordinary “ability”. One that I don’t know what to do with at times. One that is hidden from the world. The psychologist told me that because he has been so well socialised (particularly with adults) that many people may have missed it. But she knew. I knew.

I knew when he was 2. I knew he was different to the other 2 year olds. He had quirks they didn’t have. When he was 3 I started to worry. When I had another baby and had some comparison of the baby stage, I knew more than ever that even as a newborn he had struggled. Struggled to find a place in this world. He still struggles with that now. The difference now is that he can communicate his struggle with words. Which is great on one hand and utterly heartbreaking on another. Its great because I know how he’s feeling but It’s hard to hear your son tell you he does not belong here. That he does not fit in. That his inner turmoil is so great that he wishes he wasn’t here at all.

I hadn’t told many people that we were on the list for the assessment. If you met my son you’d laugh in my face if I told you I thought he was autistic. I didn’t want to offend the people who have more significant needs. I feared deep down that he would not get the diagnosis and then I’d have been wrong and even more helpless with how to help him. I also feared I’d be right and that I wouldn’t know what that news would mean for him. What impact it would have on his life. I’m uncomfortable with labels; especially for children. I didn’t want someone to tell me I had a ‘disabled’ son.

I don’t believe I do. I have an ‘extra-abled’ son. His brain is brilliant.

The psychologist told me that it’s very rare for the computer to actually diagnose a specific type of autism. In Coventry they aren’t actually allowed to. However she showed me the computers results and instead of saying ASD, it said ‘aspergers’.

Aspergers is high functioning autism.

That means he will probably go on to lead a relatively normal life, do well academically, get a good job. He’ll be able to look after himself as an adult. Some people with autism won’t be able to do that. I’m grateful for this.

But it won’t be easy for him. He struggles with relationships and the nuances of understanding them. He doesn’t realise he is liked or loved unless someone spells it out for him. He doesn’t know how to respond emotionally at times. He doesn’t pick up on non verbal cues. I worry he struggles with friendships. I’m worried he will look at someone the wrong way or try to argue a point with them and get himself hurt. Will he be a loving and understanding boyfriend/ husband/ father? I feel like now my worry for him is greater.

His Dad hasn’t taken the news too well. I guess when something like this crops up we must reflect somewhat on ourselves. Many of the things written in the report by the psychologist resonate with his fathers behaviours and indeed his paternal grandfather (hereditary autism is a whole other debate though). He thinks I’m pleased that I’ve “finally found something wrong with our son”. I don’t know any mother that would be pleased to have any such diagnosis for their child. He knows that I’ve suspected it for years; that my instincts had been screaming at me. He always dismissed it. He hasn’t lived it like I have because he hasn’t lived with our son for 5 years. Not for longer than a couple of weeks.

He hasn’t witnessed the fear in his eyes when he’s scared. He hasn’t seen the anxiety that doing things that other children enjoy brings. He hasn’t left places because the smell or the noise is too much to bare. He hasn’t held him tight and rocked him to sleep when he’s sobbed because he doesn’t feel the same as the other kids. Or maybe he has 🤷🏼‍♀️. Maybe he just didn’t want to see it.

I had a meeting with his school last week who offered me various interventions for him. I don’t want that. He doesn’t want that. I’d asked him. He doesn’t want to be taken out of classes for interventions. He wants to be like the other kids. He doesn’t want them asking him where he goes. He doesn’t want to explain. I get that. I’ve explained to him and to the school that his needs may change, that I’ll let them know if the interventions might benefit him as his school life becomes more stressful.

Nobody tells you how to talk to your child about their diagnosis. The psychologist told me to go home and tell him. They don’t do that for you. His Dad thinks I’ve scared him. The school asked me what I’d told him. I told him what I’ll tell anyone:

That he’s extra-ordinary.

That his brain is wonderful.

That his heart is sensitive and beautiful.

That he understands and notices things in this world I never will.

That I never knew how proud of a person I could be until he came along.

That to me is the best boy in the world.

I’m so proud of him…now more than ever.