Autism, seeing the world from a different angle.

I get asked a lot for advice from Mums desperate to help support their children with additional needs, desperate to not only understand their child better but desperate for the world to see how hard their children have to work to get through a normal day.

Most of these messages come from parents of high functioning kids. Families that are often told their child doesn’t look autistic. (Yes, people still say this like autism comes with a set profile picture.) Families that are used to the world not making the same allowances for their child as they would if they could physically see the disability. Families battling schools for the right level of support. Mums exhausted and desperate to feel less alone.

Being a parent to a child with additional needs can feel quite lonely. It’s stressful, we don’t want to burden friends with our daily struggles but we feel just as misunderstood as our children. We feel a constant pressure to get things right and are crushed when our child lets us know via lashing out that we have some how got something wrong again. It feels personal. It’s not. But when meltdowns become daily occurrences it’s draining, we don’t sleep any better than they do and are on high alert trying to preempt what may trigger the next explosion whilst also trying to work out what’s caused the latest one.

I relate so much to Mums that write to me saying they dread pick up. I was that Mum. They dread being told their child was fine at school only to take one look at their child’s face and see the tension etched all over it and know instantly that their day hasn’t been fine and they most definitely are not okay. Whilst these children may have the odd meltdown at school believe me when I say that’s the last thing they want to do. They don’t want to be centre of attention, they don’t want to stand out, they don’t want to be struggling. A child on the spectrum being disruptive is a child clearly letting you know that something in their world has gone wrong. It’s a cry for help: not naughtiness, not attention seeking and not bad parenting.

No parent wants to be having constant meetings with a school, no parent wants to have to ask for help, no parent wants to be the parent that everyone else talks about. If we were all perfectly honest most of us just want to fit in. It makes me sad when I read Mums say they feel like a nuisance, that the school or friends think they are lying. Mums that have reached the stage where they are questioning if they are seeing things. No parent wants to see their child hurting.

So often the problem lies in these children holding it together outwardly until they are home in their safe space with those they love and trust best before having a meltdown. The world doesn’t see how hard these sensitive children have to work to make sense of the everyday. They don’t see the child that doesn’t sleep as they struggle to process conversations and events of the day. They don’t recognise the mimicked speech stolen from other conversations, rehearsed things they’ve planned to tell if someone asks or carefully prepared answers that deliberately don’t invite further questioning. They don’t realise the need for repetitive routines, same coloured plates, walking the exact same way daily, subtle stimming, the stress immediately caused if touched or the lack of eye contact. There is so much more going on than what you can immediately see.

Whilst we have come a long way a lot of people forget that autism is a spectrum for a reason and children at the higher functioning end face many of the same struggles as those at the low functioning end of the spectrum but are too frequently told to just get on with it; the deficit is ignored because the disability isn’t obvious. Whilst those at the lower end of the spectrum can be subjected to their strengths and abilities being ignored as its presumed that they aren’t capable. Both ends of the spectrum come with parents battling to get it right.

I have been on so many courses and read endless books trying to understand and support my son better. He is so blooming smart and retains facts like one else I know but he’s also immature and struggles socially to grasp situations that his younger siblings just get without ever needing to be taught. A lot of my time is spent explaining social situations like when he is all excited having his friend round to play just to ask him if it’s time he went home now! He is so set on things happening at set times that he doesn’t pick up that he’s unintentionally actually told his friend to go home! Or when my friend panics that she’s smelling and makes the mistake of telling him this so every time he sees her and panics not knowing what to say he tells her she stinks!

My son wears ear defenders and carries a Teddy bear called Wallace everywhere with him. They help him cope better with the stresses of being out of the house. To begin with we felt the stares and were aware that he stood out more but now we don’t even notice; if it makes him happier then so be it. It’s not about us it’s about getting it right for him. As he gets older we are aware that carrying a Teddy might be setting him up for other kids cruelty. We have gently been working on popping Wallace in a backpack and taking weekend walks minus the ear defenders but when the day comes where he manages being out and about without these and his differences aren’t as visually apparent; guess what he’s still autistic.

Teachers do a phenomenal job of trying to educate classes with numerous additional needs, strengths, weaknesses, abilities and challenges in them but they are teachers not doctors. They are overstretched as it is and not medically trained to diagnose your child. Further more, the truth is CPD courses barely scratch the surface on how additional needs may present themselves. It’s called a spectrum for a reason and no two individuals with autism present the same. I made this mistake. I kept thinking they must have seen someone present like Caleb before but the truth is I hounded his school for help but it was a teachers slip of the tongue and seeing the affect it was having on my other children and family life that pushed me down the medical route. I truly believe that without paediatrician support and an educational psychologist going in to his class and seeing what we saw; we would still be battling.

The saying goes if you know one person with autism you know one person with autism. In my experience no one knows their child better than you and whilst you shouldn’t compare children there is a lot to be said for Mum gut instinct. If your heart is telling you that something isn’t right listen to it. The best result is you have a trained professional reassure you and put your fears to rest or you start the process of accessing the right support for your child. It’s a long process, it’s not easy, you will meet many professionals and your heart will ache along the way. No parent wants or expects that the precious baby they grew and stared at in wonder as they dropped off to sleep each night in your arms may not have the life you envisaged for them. No one wants to see their child struggle and no one wants to hear the word Autism but it’s a word; your child is so much more than one word.

When Caleb was a baby I remember seeing a Mum close to tears struggling to calm a clearly distressed child down in Asda. I remember my heart going out to her thinking it must take a special person with a lot of patience to cope. I remember thinking I could never do that. Little did I know I already was a Mum to a son with additional needs. I don’t know why that memory sticks with me, whether it was just a sixth sense I was unaware of or just the heartbreak on that ladies face that I longed to let her know I wasn’t judging and was actually wishing I knew how to help.

My point is I don’t have the how to on this, I’m just like you. I make mistakes, I’m still learning along the way. I talk about it and share because I want to change the world for my wee boy. I want to help him, help others understand him and those like him better. I started my blog as somewhere to let it all out without burdening anyone. I share now because I know there’s comfort in realising you are not alone, there’s comfort in helping each other and I know that I am blessed with a wee family that is so much more than just an Autism label.

If the last few years have taught me anything it is just to love the child you have in front of you. Autism Mums don’t have any secret powers, no more patience than the tired Mum next to us. We don’t love our kids any harder, we are winging it along with every other Mum out there. We accept our child’s quirks, encourage their strengths and we work on their weaknesses just like every other Mum does. Yes we have challenges that most families don’t have to face but if everyone was honest all families are facing their own wee battles. An Autism Mum is just hoping like every other parent that the love sees us through.