Letters from parents to their autistic children

Here are five open letters from parents to their autistic children which we think will help you understand better.

I want you to know that you deserve to exist. You deserve to be loved just as you are. You may see the world differently to others, but that doesn’t mean your perspective is any less valuable. You have the right to be yourself and express your thoughts and feelings. Please remember that you deserve to be treated with respect and kindness, just like everyone else. Don’t let anyone make you feel ashamed of who you are.

There might be days where you feel you have failed other people, just by being yourself, but you have not. Often it is you who are being failed – by school, by services, by society. That is not your fault. It can be challenging to feel accepted in a world that often doesn’t understand or accommodate your needs. But please know that there are people who do understand and who want to support you. You are not alone.

Remember that you are capable of achieving great things, and your unique perspective and talents can make a positive difference in the world. You are meant to be here and the world is better with you in it. 

Written by Kirstie McStay, Autistic Parent, Under 13 Community Manager at Spectrum Gaming
 

I need to tell you I’m sorry if you ever feel I find being your parent a struggle.

I find fighting the broken system exhausting. 

That is the struggle,

but you…

YOU are the reason I smile. 

I smile when I hear you watching documentaries in bed. Your curiosity and ability to learn and research is remarkable.

I smile when I find your empty midnight-cereal bowl and drips of milk on the table. You have learnt to listen to your body and to look after it. 

I smile when I find your dirty clothes on the floor, right next to the laundry bin. You have learnt to keep your safe-space clean and tidy, even though there are so many stages to everything, and remembering them all is hard. 

I smile when I read the message you have written in my birthday card. You did something that hurts your hand and takes huge concentration, because you wanted me to know you care. 

I smile, when you pace up and down the kitchen, flapping your stick and telling me EVERYTHING about a new song you have heard. You love me enough to share the things that mean the most to you and be authentic in my presence. 

I smile when I look at the pebble you found on the beach and bought home for me. You knew I’d love its cool smoothness and that it’s shaped like a wonky heart. 

YOU are not the struggle.

YOU are not exhausting.

Because you…

YOU are the reason I smile. 

Written by J, parent

I had no clue how much you were going to teach me. I thought I would be doing the teaching, holding your hand pointing out the flowers in hedgerow. Helping your stir the cake mixture in the bowl, encouraging you to finger paint. And I did. We did all these things, but the real learning began later when you started to show me so many things. 

You showed me how to freeze time. The power to live entirely in a moment. You looking at detail in the world I didn’t even know existed. To take it, this detail, capture it, replay it over and over. You taught me to listen to carpets, to feel sounds. 

You taught me other do not define who we are. That what “society” expects is irrelevant. What we need as a family is what matters. You taught me to say ‘no’. No to birthday parties, no to play dates. No to people. Because that was not what you needed. You taught be how to try and make others see that what they thought was important for you, just wasn’t.  

In doing all this you freed me. Freed us from a predefined path I didn’t even realise we were on. You helped me see what really mattered. Helped me redefine the meaning of friendship and family, of success and happiness. 

You are funny, kind, curious and sweet. Your curiosity has taken us deep into so many places I would never have gone. Inside atoms, deep into computers, into a fascinating world of gaming, back into history, through economics, delving into philosophy. 

Both you and your sister neurodivergent and neurotypical bring tears, chaos, calm, fun, exhaustion, laughter, and love. 

In turn I am here to help you.  To help you work out how to live in this crazy world. Provide space and safety for you to be you.  To work out much sooner than I did, what it means to be you. I want you to create your own desire lines across the landscape and call for me if you need me. 

I am doing my best, and so are you guys. We will never and should never apologise for who  we are because who we are is unique, amazing and wonderful. We are surrounded by love. 

Written by Elisabeth Kelly (parent) and Leo Kelly (young person)

I want you to know how amazing you are and how much you are loved. 

You are you and I love you for it.

Sometimes you say that I must hate being your parent. That you think I must think you’re such hard work.

Let me tell you that is not true.

You do not make life harder for me, you do not make me sad, you do not make me wish I wasn’t your parent. 

These are the facts: 

My life is happier with you in it.

You are my world. You make my soul sing. You are beautiful. You are brave. You are clever. You are funny. 

You are my joy.

I do wish you didn’t have to find life so difficult sometimes. 

I do wish I didn’t have to work so hard at writing letters, sending emails, making phone calls and going to meetings just to help you get the things you need.

I do wish things weren’t always so hard.

But this isn’t because of you. 

It is because schools,  people and services who should be there to help us are not helping us or they are not working or they are just not there.

That is the part which is hard work. 

It’s them, it’s not you.

I love being your parent.

I am proud of being your parent.

You are you and I don’t wish you were anyone else.

X

Written by R, parent

You were four years old when I found out that you were autistic and it was an extraordinarily difficult time. I had no idea what autism was really, never mind how to help support you. It took years of reading, researching and learning to understand better and I have to be honest and admit that sometimes I still have gaps in my understanding. Those first years were dark years, not because of autism, but because of the incredible fight it took to actually get you the support you so very much needed. They involved endless appointments with health and education professionals, countless hours pouring over reports and legal documents and Tribunals against the Local Authority. Even now, when I no longer have to fight with the same frequency or ferocity, the support you need just isn’t there. I am often very tired, bordering on exhausted, and I know you sometimes think you are the cause of that exhaustion. I have heard you apologise for making me tired, apologise even for existing. What could be more logical than for a child, seeing their parent wiped out and thinking they were to blame! 

You are not to blame. Raising a child with autism might be more difficult than raising a neurotypical child, but that has nothing to do with children and everything to do with society. This stupid society my love is still a society that is geared towards a neurotypical reality and that excludes anything that falls outside the limits of a so called, and forever elusive, “normal”. I’ve told you so many times that I wouldn’t change a single thing about you; I love you just as you are. What I would change everything about though if I could, is society. If I could, I would make sure all teachers and nursery workers knew the signs of autism, that schools automatically had the right support for kids of every neurotype, that stores and cinemas and theatres and clubs were accessible and ok for all. I would make sure that all parents were taught about parenting an autistic child, where to find the right support, how to cater to sensory differences and how to understand anxiety in autism. We have to know about those things well ahead of time, well before having kids, not just in the off-chance our own child might be autistic but to make sure every single human being on this planet knows and respects all neurotypes. I would want autism to be celebrated every single day in this world and to be an accepted, widely known and understood neurotype to have. No one can change the world with the flick of a switch. And in this society, the one we live in at the moment, things can get hard for parents. Not because of our magnificent, unique and beautiful kids, but because of the barriers all around us, the lack of professional understanding, the dearth of support, the lack of services. You are absolutely right, I am exhausted. You are however, also wrong; I am not exhausted because of you. I am exhausted because of all the stupidity I have to fight through every single day, to get you the support you need. This battle might be long and tiring, but I am so honoured to fight this battle for and with you. Part of what might seem like exhaustion sometimes is also me feeling that I’m failing you, a feeling of shame that I am not able to fix the world for you right away;  parents should be able to make everything better right away and when we can’t, oh how ashamed and helpless we can feel…  I am so incredibly proud to be your parent, so incredibly honoured that this role is mine. I would fight through a thousand years of societal stupidity for the honour of being your mum for a single day. Let’s unite in understanding who and what the problem is in this world and work together to change things for the better: for you, for your friends, for your kids and for the thousands of children of every neurotype currently struggling to fit into this narrow-minded and elusive definition of “normal” our society seems to be made for – let’s fight to make this world fit everyone!

Written by Zoe Karakikla-Mitsakou, Parent
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