An open letter to my friends – with love from the parent of an autistic child
As many of you know my child is autistic (and yes that is the term my child and I prefer so please don’t challenge me on it), some of you have been on this journey with me others may not know or may not understand how to approach the subject so I just wanted to clarify a few things.
Although are times I have struggled and there may be more times in the future, I do not consider my child to be a burden or a tragedy so please don’t frame it in this way.
I am no hero and certainly no angel, I am a parents who loves her child like any other.
My parenting may be different to yours, that is because my child is different to yours, please keep opinions about it to yourself unless asked and I promise I will do the same for you.
My son is home educated because the school system failed him not because I chose to take him out on a whim. Having said that I have discovered that prejudice against home education as a ‘lesser education’ are largely unfounded. Have faith that the the vast majority of parents I will always do anything I can to provide my child with the tools to succeed even if the current education system is not fair or equal. Next time you pick your child up from school please remember how lucky you are to have a school that supports them.
I am not deliberately isolating myself or my child or avoiding you when I turn down your invitations or don’t invite you over it is just that social interactions and recovery times have to be carefully balanced for autistic people so I have to navigate that carefully with my child. Please be patient and keep inviting us, it makes us feel wanted and some days we just might surprise you and turn up.
I do lots of research, I have done more research than you even thought existed but I am not looking for a cure or a solution to my child or a way or forcing them to do things they find painful without showing it. I accept and love my child the way they are and will always support them to live their best life, so please don’t send me articles about cures or diets.
Much as I love my friends and family I brought this child into the world so I am responsible for their life in the most literal sense so they will always come first, it you care about me to you will understand.
Please do not try to force my child to make eye contact, speak to you or hug or kiss you on the cheek. If they feel comfortable enough to do these things they will do them without the need for a prompt or coercion , understand it’s not personal, it how they are feeling on the day and in the environment.
I am sorry if this list seems long or intense but you have no idea how many times a week these things come up or the tactless things people say. If you don’t know what to say or you don’t agree with me then don’t say anything , just trust me to parent my child. If on the other hand you want to help here are some things you can do.
Listen to me without judgement
Believe in my abilities as a parent. Trust me, I’ve got this.
Accept my child the way they are.
Seek out blogs or books or social media pages by autistic people and listen to their experiences if you want to learn a little more about autism rather than relying on ‘experts’ who want to treat my child as if he is broken and needs fixing.
Keep in touch, I still need friends, my child still needs friends too. We love you guys.
If you want to compliment my parenting go ahead but don’t act like I am special because I have an autistic child or use phrases like ‘hero’ or ‘angel’. Try instead saying things like ‘I admire the way you seek to understand your child and give them what they need’. Or “you work so hard to get your child the right support’. Remember this is my child, I love them, I want them, I find joy in having them around.
If I decline an invite ask if there is anyway you can make it easier or offer an alternative. For example if you ask me out for drinks and I say no perhaps offer to pop around after my child’s bed time with a bottle of wine for a catch up maybe.
If you do turn up for a visit please make sure it is planned in advance and you turn up on time. Its great when I am asked if I need anything you can pick up on the way as I can’t always just pop out to the shops.
If you wish to offer support then a text or phone call asking how it went after a meeting, appointment or trying something new is a good thing to do as it helps knowing someone cares.
If you got to the end of this letter then thank you and understand that I value your friendship enormously and if you are thinking That you have always acted as this letter suggests then know I will of noticed and appreciate it so much,