When Joseph was first diagnosed with autism, I only told a few select people. Some of those people had known what was in the offing for some time but even then I felt it difficult to discuss. I didn’t want people’s sympathy or for them to be thinking “I told you so”.
I’ve always been a person who has worn my heart on my sleeve, often being told that I tell it how it is, whether that be the good or the downright shit. Joseph was only three when he was diagnosed, it wasn’t something we had lived with for years and battled for a diagnosis. Having him in our lives still seemed pretty new and by talking about his autism, I knew people would want answers. They’d want to know how far along the spectrum he was and what the future would hold. How could I face those questions when I didn’t know the answers myself?
I didn’t want everyone to be talking about Tina who now had a son with autism rather than, ‘just a son’. I wondered whether people would judge me and scrutinise my lifestyle whilst pregnant (there wasn’t much to scrutinise). I didn’t know many people with autism but it seemed that people just didn’t talk about disability and that was just fine, because I didn’t want to talk about it either.
I was encouraged to join support groups and speak to other people who had children with autism. I didn’t want to because my only taste of that seemed to be so negative and I didn’t only want friends who had children with additional needs. I’d been more than happy with my existing friendships and I didn’t need anymore.
I had wanted to speak to people who were a few years further down the line than us but could give me the hope I desperately craved for whilst remaining honest about the difficulties we no doubt faced. Unfortunately, those people didn’t magically appear and I didn’t do much searching either.
I juggled an autism diagnosis together with the breakdown of my marriage and I was no doubt a needy friend. Those handful of friends, became my lifeline. My parents supported me with the practical aspects but my friends were the ones that allowed me to vent, cry, laugh and gave me that encouragement to keep going.
I’ve hit a few rocks in that time and each time they’ve been there to pick me up, sometimes to give me some harsh truths and a kick up the arse, but they’ve been there. I often hear that people lose their friendships because their paths take them in different directions but my friends are the Dog’s Bollocks. We still share the same humour and still have the same things in common (generally all knobheads). The difference now is, I can share experiences that they never will and I hope that they have gained something from that too.
And whilst that circle has stayed solid, there has inevitably been friendships that haven’t stood the test of time. I don’t believe it’s because I have a child with autism but friendships need working at and unfortunately if they don’t receive the right amount of care and attention, you grow apart. Like with any relationship, it can’t be a one-way street. For all those times I’ve been needy, I like to think I have given something back but sometimes it’s not possible to maintain certain friendships.
These days, I feel entirely comfortable with Joseph’s diagnosis and the way we talk about it. I’m even at the point where if someone asks me where he is on the spectrum, I no longer feel I need to be polite and respond with the easier option of “oh well, you know somewhere in a middle”. I feel confident enough to explain that the spectrum is linear and I would rather discuss what Joseph’s abilities are along with the areas he finds more difficult as opposed to defining his place on the non-existent line.
I’m happy that even in six years, the world seems to have moved on in how we talk about and view autism. People want to know more and not just those who have a connection with it. I like to think that my friends also play a part in that, because it takes everyone to talk, listen and educate. I know that they are the type of people who, like me don’t feel the need to change Joseph, just the world around him.
Sometime ago I wrote a candid post about The Keeper but this post is for MyTribe.
To all of you, I will be forever indebted.