How it feels: Having a child with Autistic Spectrum Disorder (ASD)

Mother Sider Della has three brilliant boys. Her middle son has Autistic Spectrum Disorder (ASD), which is often met with a supreme lack of understanding and, as with so many of the things our guest writers write about, ignorance and rudeness.

Here, Della gives us a glimpse into O’s world and the challenges he faces, alongside breaking down some of the ridiculous stigmas associated with ASD. From a teacher’s point of view, it makes me realise how poorly equipped so many schools are in supporting students with ASD. It is an enlightening read.

Over to Della…
Middle child is.
When you pick up your children from school, do you smile at their teacher?
For a whole year I tried my best to avoid her eye when I picked up my middle child O. Because I knew that it would result in the dreaded….. “Can we have a chat?”

You see, for a long time O had been struggling with social interaction, with understanding what others wanted of him and understanding what those hidden social cues that were so well hidden to him meant. And this is why I avoided his teachers gaze. She would tell me all his mis-deeds. His too rough with one person and his crying at seemingly nothing the next. How he didn’t like to work and just wanted to have his hands in water, how he wouldn’t look at her or talk to the other kids.

It didn’t end with school, playgroups were awful and I felt that the other children would round on him as the odd one out, he’d try to make friends now and again and they would laugh at him for odd things he would do. So he played to that because he couldn’t tell laughing with from laughing at. Mums would tut and take their kids away from him, or look at me like my AP parenting was to blame for the kid who would make noises over and over.

At home with his brothers, he played wonderfully, they understood him in a way that other children never could. They gave him space when he needed it and they knew how to bring him into a game with just a few well timed words. But this was sharply contrasted with those moments where he would become overstimulated and look past people, almost like he became lost in a fog. Talking to him on these occasions was like speaking to someone through frosted glass. He could see someone was there and that they were talking to him, but he just couldn’t hear what it was they were saying. I would try anything to bring him back to us, back to the laughing cheeky chops he had been just a few hours earlier.

Family thought he was naughty, arguments over his lack of interest in people or how he would need more time to adjust to changes in the room (new dogs around or just a change in furniture) would make any family gathering stressful, as this anxiety manifested itself as noise and movement and turning off his hearing.

Everyday. Every pick up. I felt utterly worn down.

It was about now that I knew I needed to ask for help, to ask someone to hold our hands and say this isn’t your parenting, this isn’t something you have done, this isn’t anyone’s fault and, despite those whispers at playgroup, there is nothing ‘wrong’ with him. Because ‘wrong’ isn’t the word. He’s not broken. He’s not waiting to be ‘fixed’.

I’d been to the GP and they had said that if it was something I really wanted to push they might refer him to someone. It never happened. I went to the Heath Visitor and finally it felt as if someone was listening to me, listening to him and taking our feelings and concerns on board. After my first meeting with her it took close to 13 months for the referral to come though and, by that time, I had Googled the living hell out of everything he had or had even come close to doing. This is something that I still feel quite raw about and, even now, years later, we are still in this process. Going to appointments to see audiologists and speech therapists only to be discharged, signed up again months later, then being made to wait for another appointment is frustrating. It’s not helping him but these are the hoops we have to jump through in order for him to get the care he needs. When we did see a paediatrician she was surprised that it had been such a bumpy road to get to her. She asked questions that I found myself saying “yes” to, over and over. She watched him; she talked to him; she talked to me. Then she said something that felt painful to hear but also a massive relief to receive: “He certainly displays traits that would put him firmly on the spectrum.”

But there is something that no one told me about in all of this. You just don’t want it. 

Because you know what it means. He has to fight harder, try harder, work harder and that takes so much freedom away from him. ASD means that people label him as ASD not as O.

It means that they don’t see him struggling: they see ASD.

They don’t see him having to try so hard with phonics and reading with me twice a day just so he can keep up with his peers: They see ASD.

They don’t see what a wonderful and brave boy he is, they see the class clown who’ll do anything to feel accepted: They see ASD.

The guilt we had as parents was so heavy it felt physically real. Did we do something? Was it something I did or didn’t do in pregnancy? Maybe I had them too close together? Something I did must have done this because it’s cruel that something like this can be ‘chance’. I wished it away and I cried for him.

It’s been a journey to find the right school for him, without kicking the hornets’ nest of emotions I have about it, I can say that the words ‘disappointed beyond measure’ accurately describe his experiences with a local school he attended just after we moved. The guilt we carried, thinking it was all our fault, was doubled when they said it was all down to ‘parenting issues’ and again when they later said they didn’t have or want to provide support for ‘a child like O’; that he wasn’t a ‘good fit’ and that we should find a ‘more accepting educational setting’. The rejection we all felt was staggering and highlighted the stigma ASD still holds, alongside the lack of knowledge and the lack of empathy some people can have.

But I had a realisation. A moment of clarity that has stayed with me since. He’s amazing. Not ASD, not loud, not boisterous, not blank (someone actually said he was ’emotionally blank’…. Yeah, we don’t see them anymore….ugh), but amazing. He can see the world in a way I will never be able to. He can think in a way I never could and he will have an amazing life because He. Is. Amazing.

We found a wonderful school who I cannot praise highly enough. They celebrate him, they love him and they take time to help him. He has had some ups and downs there but they have always communicated with me, with local ASD support and, more importantly, had the ability to empathise with him. He feels part of a family at his school, he has made friends and he has flourished under their care. Finding the right school has been like a breath of fresh air to us all, and has grounded us all into a community that understands him.

If I could start it all again I would kick myself right to autism teams locally. Some LEAs have a team they talk to about support in schools and these are the people who can be a massive help. CEAT (Cheshire East Autism Team) have helped the school he’s at now to understand him, they have helped me to see a wider community and given us the ability to see a bright future. I’d also put less pressure on him to be something he’s not. Living with ASD doesn’t mean you are a round peg in a square hole, it means we should be looking at why it’s so important for everyone to fit in those holes!  I’d say relax. Laugh about it. Talk to people about it. The more we talk, the more people understand and the more you personally can work that guilt out.

I poured over resources like www.autismuk.com and found more active learning solutions to take advantage of cognitive learning at www.twinkl.com, but mostly I found a good support network can really help. If you just need someone to talk to then Home Start helpers are there and you can even refer yourself without a HV or GP.

Looking at him growing every day, being surprised at his depth of understanding and ability to take in everything about him, I know that our journey will be a great one. We will have bumps on the road, sure we will. But we can face them as a family, together.

Oh and he tried to Cuprinol my car once. So yes, I’ve wanted to murder him at some point.

Della, writing for The Mother Side xx

Follow us on Facebook here.
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s