Being the parent or carer of an autistic child, or any child with additional needs, can be exhausting. Not because our fantastic kids are a problem, but because we have found ourselves supporting a neurodiverse child in a world that is very definitely designed around the needs of a largely neurotypical population.
What this means in practice, is that while we are advocating for our children, (and sometimes for ourselves, as ASC has a strong genetic component and we are statistically likely to be autistic or have strong autistic traits ourselves) we are constantly running up against systems that are not designed with our families in mind.
Not only that, but our society is still woefully underinformed about what it means to be autistic. Every autistic parent or parent of an autistic child has their stories about difficulties accessing adequate education, problems experienced in shops, on transport systems and assorted other service providers who just don’t get it. And information about autistic girls is still hugely lagging behind information about autism in boys, because it is only relatively recently that it was acknowledged that girls can even be autistic.
So all this knowledge and information trickles down, drip by drip, descending slower than a glacier, while here on the frontline, our children are continually misunderstood, misdiagnosed or just plain ignored, usually to their detriment. There is information out there, and there are support groups. Every borough in the United Kingdom has, by law, to have a pan-disability parent partnership support group, funded by Contact (formally known as Contact a Family). They decided to fund these groups because they realised how incredibly important it is for families and carers to have peer led support. To have a place to go, even if it is a Facebook group (and these can be lifesavers, as many of us find it hard to get out much, if at all). I'm not sure of the systems in other countries, but I will try to find out and add a list as soon as I can.
These places are where you will find your tribe. Other parents and carers going through the same experiences as you, who will just get it, without you having to explain. Who will have loads of answers to all your questions, because between us all, we have amassed several encyclopaedia’s worth of information about Autism, disabilities and how we have problem solved over the years.
To find your local group, go to your local council website and look for the ‘Local Offer’ (Yes, I know. If I was naming a section where all the info on SEND was collected, I’d call it something catchy like ‘Special Educational Needs and Disabilities’, or maybe 'The SEND Info Section', but ‘Local Offer’? Go figure).
But here’s the thing. No matter how weary and despairing you feel, no matter how exhausted, frazzled, stressed, anxious or burnt out, I want you to remember something. It’s really important, especially now that the whole issue of Gender Identity has been thrown into the mix, and so many of our children are caught up in it's rainbow glitter promises of friendship and acceptance where previously so many of them have faced nothing but rejection, bullying and isolation.
It’s a long road and there will be many battles that will wear you out and also test your faith in humanity, but in between each mountain is a valley where you get to rest, even if briefly. Even if just for 5 minutes.
When those moments arrive, when you occasionally have the chance to stop and breathe, grab hold of them. Use the space to try and recharge and be kind to yourself. If you have a partner, make sure you share the load and make space for each other to have a rest. Resist the temptation to blame each other. If you have a partner who disagrees with you, make sure you find a friend or a community to talk to. And just know that whatever is thrown your way, you are not alone. You have all of us behind you. Because we are a community. We are an army and we have each other’s backs.
And another thing. Remember that all of us, fighting these battles every day, are making it easier not just for our children but for all the other ASC kids out there. Every fight we have, every conversation, every letter, is a teaching tool and we are, slowly, all of us, in our actions, changing the perception of ASC as well as gender identity issues and what it means for our brilliant children.
As we raise our voices, it may feel like something small, like explaining that your child is having a meltdown because they are autistic, or just asking someone to dim the lights, because of sensory issues. It could be having a conversation about why you think your child wants to escape being themselves, or how the current school curriculums are ratifying everything about identity that they are finding online and why autistic children are so vulnerable to this. With every conversation, or article you share, other people are learning.
Every time you speak up for your child or for yourself, every time you have a conversation with a teacher, or a social care professional, or a service provider, or just a friend, you are raising awareness. You are helping someone else in the world to understand what ASC means and how it affects us all. We all have that power, to share and educate and raise awareness, in big ways and in small.
And every single one of those moments matter.
They matter because eventually, all those moments build up and reach critical mass. And when that happens, then change will happen. Our voices will be raised so loudly, they can no longer be ignored, and politicians, and educators, and service providers and everyone else who comes into contact with our amazing children, will have to listen. So don’t be afraid of your voice. Believe that your voice matters, because your voice, however small you think it is, is what will help make that change happen.
We are changing the world, between us and making it safer for our children. Hold on to that thought.
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