Is your world a better place with a diagnosis?

Knowing who you are and yet not understanding why you are must be confusing at best, crippling at worst. I understand that for some, the not knowing might seem a better option than being 100% certain. Fear of the unknown though in my opinion leaves so many possibilities open, so many pathways for the brain to follow. It’s the what ifs that would keep me up at night.

My experience of getting a diagnosis for my son was a relatively simple one. Speech therapy at 18 months led to a paediatricians appt at 25 months led to a diagnosis at 34 months. Two months before his third birthday.

Sam has autism, and that was obvious from very early on. So to us Sam always had autism. For so many older children that is not the case. They may match their peers in many areas so that the ones they don’t get missed. It’s easy enough to do I’m sure. As a child growing into a teenager thinking you should be able to cope with life yet at the same time wondering why you can’t must come under that crippling bracket I mentioned. Add in the usual mixture becoming a teenager brings, still without the emotional maturity, one might expect you to be able to ‘man up’ sort yourself out. Give your head a wobble and get back to normal. But what if when you stop and think about it your normal had always been different from everybody else’s? You realise, which you can now your that bit older that maybe you aren’t who you thought you were. You’re still a child and this is extremely hard to understand.

What happens then? As an adolescent I imagine you might retreat into yourself more and more every day. If you don’t have support. 

If you can’t understand yourself, how can you help others to understand you?

If you’re lucky your parents and loved ones are by your side or giving you space as you need it, fighting tooth and nail to find a solution. To do whatever they can to help you feel better about yourself.

These parents have it tougher than most in my opinion. When we got diagnosis nearly 3 and a half years ago, of our wee baby boy, we were able to in time recalibrate our parameters. Learn before he needed answers. We processed and we carried on. Because we were still raising a toddler, admittedly with varying needs, but I could still pick him up, sit him on my knee. Baby him. Mother him.

It wasn’t easy but switching things up relatively early on came easier than I imagine than that of parenting a seemingly neurotypical child through mid childhood only for red lights to start flashing further down the line.

Those parents have a lot to work through. They have to rule out bad behaviour. Is it just anxiety, depression? By ‘just’ I don’t mean they are less worrisome I mean they can be looked at in simpler terms. The gp can help.

When anxiety and or depression is coupled with something like autism I can imagine the legwork needed to parent that child is monumental. Add in the horrendously long wait for services. It’s a fight you don’t know you’re gonna have until someone writes to you and says. “Ok we acknowledge your concerns, we’ll see you in 18-24 months to discuss it further. ” That’s when the parenting mettle is tested. While you wait.

Those parents see their children’s fears. Most will be able to voice their feelings to their parents, but most of those adolescents I imagine will not look too deeply into themselves. They will lock themselves up tight. It is up to the parent to fight for their child at this point. It’s up to them to make sure their child knows, we have this. They have you and they will not let you down.  

I truly believe diagnosis is key. It’s certainly just the beginning, not the end. Just having one word to look at, to relate too can mean eventually understanding. 

I say the word autism to Sam all the time. I tell him how special he is. How we value him and how in the future we can help him navigate his life easier, once he can articulate his feelings to us. We will be listening.  He’s not listening when I’m talking like that. I can tell when he is. But I talk to him about it anyway. 

So I hope if anyone out there is struggling to figure out what is going on in their minds or that of your children, you keep looking for answers. You will sleep better knowing them. All children regardless of age deserve nothing less than to know who and why they are.

Obviously my son is 6. We don’t have conversations. Yet!! Neither do I have experience of a teenager on the path to diagnosis.  I do have a teenager awaiting an assessment, but that was to rule out more than anything else. If we didn’t ask I’d never forgive myself if I were wrong. I am as certain as I can be that my eldest doesn’t have autism. I’ll ask the professionals though.

I have chosen to write this for a good friend of mine. Everything I have said are my interpretations of how life has been for her son in recent years. And While I think this topic deserves highlighting, I wanted her to know how bloody brilliant I think she is.

She is a warrior fighting for her child, her strength and determination not to allow him to descend into confusion any further than he had to is something I understand, because even though our paths are different I understand her need to fight for her son as I would fight for mine. He may not have autism at all and if he doesn’t she will carry tirelessly on. Because she’s his mum. One thing her son will know for certain is how much he is loved 💙

One thought on “Is your world a better place with a diagnosis?

  1. Barbara Hallsworth

    Amazing words Jodie! Well done. I think you should put all your words about Sam into a book (Part 1 of course). I am sure your website is such a help to parents.


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