I just wanted to write a little something that has been on my mind, maybe to off-load a bit for myself but also if you are searching for a bit of support and help if you are on this parenting journey too. It’s no question it’s very hard being a parent of an autistic child and we have so many hurdles to jump and barriers to knock down, but there are lots of us in this together, and you are not alone.
So here is 10 things I have learnt since becoming a mother of an autistic child :
1. People often don’t and cannot understand.
They can’t. Unless you are in this, it’s very difficult to ‘get it’ : what we go through and how our lives have changed. That’s not their fault so try and also be mindful that it’s a hard topic and situation to really ‘get’. If people ask I like to inform them and share because I really think it’s important to get awareness out there surrounding autism. The more people understand, the (slightly) easier it may become for us! I didn’t even really know what autism even was until the conversation started being brought up when Margot was not reaching any of her developmental milestones – I try and be empathetic to those who may be like the ‘old me’ and not know much about it.
2. You have to fight…continuously.
Simply for what is a child’s right in this country in 2023. Who knew?! It’s really fucking tough but there is constantly something I am fighting for and I’m am only nearly 5 years in.
So far, I’ve had to fight for…… a diagnosis, doctor’s appointments, funding, nursery issues, the EHCP process, trying to get her a place in a SEN school (son’t get me even started on that – I’m 6 months in of fighting this pretty much daily as I write this), Speech & Language therapy appointments, occupational therapy appointments, a paediatrician referral…..the list just doesn’t end and I’m absolutely exhausted. I’ve had to contact my MP twice and now I am in contact with my local councillors… simply to get a safe education for my daughter. It’s madness what we are put through – like we haven’t got enough on our plate.
There has NEVER not been something I’m fighting. Please remember though… you are not unusual or alone, we are all fighting behind the scenes.
3. Everyone’s journey is unique. Don’t compare!
Autism is a really different journey for everyone. Autistic children can have so many different needs, behavioural problems developmental issues and triggers. None are the same so stop comparing your child to others. You will over-analyse things and wonder ‘why can xx do that and mine cannot’ etc etc. For example so many autistic children can talk when they are 5 whereas my Margot cannot – I shouldn’t feel shame or that I am a bad parent because of this.
4. People can be inadvertently offensive.
‘Everyone is a little bit autistic’ ‘isn’t she naughty’ ‘she’ll eat it if’s she’s really hungry’ etc etc.
I think people say this as they are simply ill-informed as opposed to trying to offend you but it all can be a bit eye-rolly after hearing these things umpteen times. One of my friends always compared my daughter being autistic to someone she knew who was dyslexic….continuously. Like it was similar or the same. I tried so many times to try and explain this really wasn’t comparible but she really didn’t even listen and it was….kind of offensive. People will offend you and it’s probably something that won’t ever stop – I think sometimes people are tying to resonate or make you feel better but it really can have the opposite effect. Try to not take it onboard, it’s them being uninformed, not you…. and you have too much on your plate to be letting the little things get to you.
4. Friends may not support you.
…and it’s often the ones you least expect. I wasn’t really prepared for it but it does happen and that’s just the harsh reality of it. It really fucking hurts. You question yourself and think it’s *your* fault. You wonder what you have done wrong. You feel like your problems are too much. You even ask yourself if it’s because your child has autism that they no longer pick up the phone or want to see you. Sometimes you may never find out the true answer but you just need to absorb the pain and move on.
At the end of the day I know it’s not down to other’s to support you and try to help your situation but I know for DAMN sure if my ‘friend’ was going though this, I would at least be trying to check-in and reach out on occasion. Parents of autistic children are under incredible pressure. Parenting x 10 and then some. We are carers, we are fighting, we are exhausted, we are sleep-deprived for years on end, we are often really fucking lonely and depressed, we are often isolated, we are ridiculed, we are looked at, we are tutted at, we are judged and we are often battling ever single day to simply get to the end.
I’m not sure if it’s because people don’t know what to say or how to support, they don’t think we need it or they simply don’t want to use their time and energy up on someone else’s ‘hardships’. Perhaps a combination of them all….maybe some other reason but I promise you you will probably feel really let down in this journey. It’s a VERY lonely road.
If you are reading this and have a friend with an autistic child, please check-in on them – they may be struggling really hard but not talking about it.
5. SEN parent’s are your support network!
It doesn’t happen much but when I happen to meet another SEN parent out and about I feel like I want to cry with relief – someone who gets it! I think because we are all going through so much we also become quite resilient and strong and most SEN parents want to help others as they know how bloody tough it is. I met a SEN mum about 6 months ago at a park and we have stayed in touch and through that I have met other people and hopefully more friends.
I can’t say this enough : you need other SEN parents in your life for support, off-loading, advice and just a friend who understands. If you are struggling with this, join some local FB groups and you can open up and start chatting – even be honest and say you have moved to xxx area or you want to meet up as you haven’t many friends etc. Soon enough you’ll have a network of like-minded people around you.
6. Social media can be a great place to get advice and help.
Kind of on from the above point. It can be a really great place to ‘meet’ and chat to people who are going through similar situations as you or simply get it!
If you don’t want to or don’t feel confident in joining in chats or asking questions publicly then you can follow a wealth of accounts that provide information, support, knowledge and even some fun light-hearted sketches about being an autism parent. It kind of makes you feel less alone in what can be quite a lonely place.
Some people /accounts I like to follow :
Autism and Sensory Processing Support UK (Facebook)
EHCP Experiences England (Facebook)
You local SEND group (varies depending on where you live – Facebook)
asd_with_a_g_and_t (instagram)
storiesaboutautism (instagram)
nationalautisticsociety (instagram)
There are so SO many more – usually by following a couple of accounts on instagram you will be shown more and from their accounts they will share others etc.
7. You need time out (easier said than done!)
Motherhood, whether you have neurodiverse or neurotypical children is really hard. You do lose yourself and you really need time to find yourself again. I think more so when you are a SEN mum/parent as getting time to yourself / even dinner with your partner can be really hard.
In our case, I do not have parents or family support, or really anyone I can ask to look after Margot without us being there as it can be very difficult to manage her unless you are with her a lot and know how to handle her and her unique behaviour. Myself and my husband have to miss pretty much all social events now, or go solo. We usually get away for maybe one night a year if pre-planned ahead meticulously. Lots of SEN parents I know may not get away for a night for many years. It can be hard to find yourself and have that time out you really need but even if it’s a daytime excursion, a coffee with friends (with no kids!), a spa day so you are home for the evening or just taking a morning to go and have a hike or something YOU love….please do try and find the time and means to do this.
8. Keep. Trying. Even When it fails.
Going out to a restaurant? Going for a coffee with a friend? Softplay with the other mums? Even trip to the supermarket or the local park. Seems probably quite normal things right? Well often not for autism parents. All these things can be anxiety-inducing disasters, overwhelming and over-stimulating for our children and complete no-go-areas.
I’ve been in so many difficult situations where Margot is having a full-blown meltdown in these public places, when I am on my own, and trying to remove her from the situation as she is screaming, head-butting me and everyone is staring. It can be traumatic for us both (her more than me) and it often leaves me in tears in my car, and never wanting to do that thing again. However, I think normalising these social situations as much as possible can be nothing but good so you can get your child used to these things and try and incorporate them into a more ‘normal ‘ life – it’s for your benefit as much as their’s. When this happens. I take time to recover and re-energise and I just go again – keep trying, the next time it may be ok. It may not be but just prepare for that – pack the things you need, prepare a back-up plan and stop worrying so much about what other people are thinking of you as a parent.
9. Enjoy the moments of motherhood.
You can get so immersed into simply being ‘a parent of an autistic child’ that you can almost over-focus on that and nothing else. I’ve been there and am still often there and need to really snap myself out of everything being about autism, worries, the future and issues surrounding it. You are a mother and you need to enjoy the ‘normal’ motherhood moments too ; the hurdles, the developments, the first words, the milestones, the cuddles, the love, the happiness. There are so many precious moments and try to focus on these good things rather than the tough! Again, this sounds easier said than done and I have to remind myself of this constantly but they really do grow up fast and I would hate to think I’ve allowed these moments to pass me by.
10. Ask for Help.
If you are struggling and everything is constant overwhelm – ASK FOR HELP! Please do it sooner rather than later. I have no shame in saying that I have needed help with my mental health over the years and I’m continually going through this process. There is only so much your friends and other SEN mum’s can help you with and sometimes you need a bit more – call your doctor and get an appointment. There is no shame and it feeling happier and more in control will allow you to become a better parent.
Please let mw know your thoughts. It’s actually been really nice to get all of this off my chest and written down as there is just so much to un-pack with this on-going journey. You can also always DM me over on Instagram or e-mail me hellolauralouise@hotmail.co.uk if you need some advice and direction.
