Dear parent of an autistic child,
I wanted to use this post as a opportunity to write to you. Weather your child or young person has been diagnosed with Autism a while, is newly diagnosed as being Autistic or you are somewhere in the process of getting a diagnosis this is for you.
While I am not a parent and am approaching this from the perspective of an autistic individual I can recognise you don't have an easy job! To be honest I don't think anyone that claims parenting to be easy is telling the truth weather you are parenting an neurotypical or neurodiversity child! From my experience of looking after children and young people all day at work within a hospital setting, they can be HARD work! So add to the normal challenges that parenting brings, you have got a child that in some respects adds to your parenting work load.
As I have grown up I have realised just how much my parents have done for me and how this has shaped me today. So I wanted to write to be both honest and to encourage you.
The first thing that I want to say that may be obvious but I think is so important is to understand autism. People will tell you so many things but understanding it for yourself is really important. Pick a reliable and honest source such as the National Autistic Society (NAS). I have also written a blog 'What is Autism', while maybe not as good as the information that NAS provide, its my first hand and honest perspective of what autism means to me.
You will have probably realised by now that this world isn't really designed for autistic individuals. This makes it a very challenging for us to access the world and as a knock on effect means more work falls to you as our parents to fight for our place in the world. Sadly this is a reality for many autistic families, everyday brings a new battle that you have to fight for your child. This makes me so cross.
I can remember the battles my mum and dad had in advocating for me particularly throughout my education, fighting against a system that just didn't suite my needs. My parents had to fight (alongside the SENCo) to get the right funding to support my needs within school. They had to fight to get the headteacher to understand that my path though education wasn't going to look the same as my peers. They then had to fight when I decided my education was going to look much more similar to my peers... Sorry! But they never stopped and for this I am so grateful. At the time we might not be able to understand or express our thanks for what you are doing for us but I want to say thank you to you for every battle you are fighting for your child or young person however big or small.
Every battle that you fight must be exhausting but it is shaping your child and their future. I also really hope that each battle that parents have to fight maybe one day will start to change things. The more we can share these challenges and battles maybe some day someone with a power to change this will listen and the world will become more of an equal playing field for us amazing neurodiversity folk.
I also want to take this opportunity to talk about meltdowns, something that I am sure every family with an autistic child is far too aware of. There are two things to say about this.
Firstly, autistic meltdowns DO NOT mean or make you a bad parent!!!! I can't bare it when I am out an about and there is an autistic individual having a meltdown and everyone feels they have to stop and stare or even worse comment. You are an incredible parent and doing your best to give your child a variety of experiences It is society that has a problem and needs to change not you.
If your young person is like myself then these meltdowns may be kept up and saved for home. I use to have extreme outbursts at home. I could keep it together all day at school but would explode with anger and confusion at the end of the day when I got home. If this sounds like a familiar story then I want to tell you this is nothing personal against you, in fact its the opposite. We meltdown at home because we feel safe, loved and accepted. I completely get that its not fair that you have to take the brunt of this and then fight to get others to understand that your who is an angel at school can be the opposite at home. But I just want to say I am sorry. It is horrible for you to witness and control but you do an amazing job.
I still remember some of the meltdowns I had and feel so guilty about this but also remember how scared and how out of control I felt at these times. Your love and support means so much at these times. Even if we don't really know how to show it...!
Parenting an autistic child isn't easy and it is some important to look after yourself. As a nurse throughout my training we were told you can't look after anyone else until you look after yourself. Easier said than done but so true. Raising an autistic child will throw different challenges at different ages and stages so is definitely a marathon not a sprint.
Making sure that you look after yourself, reach out for support. Talk to your local CAMHS team, your child's school, your GP, family and friends. It doesn't matter how as long as it is someone you feel you can honestly talk to about the struggles you face. Talking can be such a great therapy (formally or informally!).
Different areas will have different provision but it is also worth researching local support groups, these are available for both young people to attend with peers and for parents to meet other parents of autistic children. It is worth contacting your local NAS team to ask them about any support groups they may offer.
The NHS also have an online search facility to find local support groups for families for children with additional needs including autism which may be worth a look for your local area - Find Autism support groups services - NHS (www.nhs.uk).
If you are a social media user I would also recommend searching for the Autistic girls network (The name suggests it but aimed more at autistic girls) but this is a great online community of both autistic girls and family members of autistic girls and a great platform for peer support.
As I finish of this post I want to encourage you to take time to think about the amazing things that your autistic young person brings to your family. Maybe write these down as something you can come back to on a day when parenting is hard work and the positives are so hard to see.
Remember you are an incredible parent to an incredible person. Hang in there.
Hannah
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