Whose Autism is it anyway?

As soon there were suspicions of me and family being on the autistic spectrum I wanted to write about it. I felt there was a story to tell. A story untold until the way I was could be explained. I felt it needed an explanation. I, found it odd. Other people, found it odd. Suddenly it all became clear. I wanted to explain. I wanted to clarify. I wanted to inform and help if I could. It seemed no one really knew much about the autistic spectrum despite there being so much public information out there.

When I was diagnosed I felt tremendous relief. I felt I needed a diagnosis for people to believe me so that they didn't respond 'no, not you.' To be honest all I received now when I tell people is 'oh'. I didn't have the courage to go and speak to other people on the spectrum.

I instinctively knew that others viewed autism differently and have different ways of expressing themselves and different fears and joys. I knew that some people wanted to celebrate the ASD that they or their child has. Others were in pain. They saw their children suffering and they wanted this thing to be gone. They wanted it cured. They had no time for these celebration people. They were at times hostile. I was afraid. Afraid of offending someone with my lack of knowledge so I made sure I knew what I was talking about by completing a year-long course on every aspect of ASD.

Looking for comfort and looking for acceptance. An acceptance which I had never received.  I joined a Facebook group of like-minded individuals. I was silent for a while but witnessed differing opinions. It seemed at times that people were scrambling around, confused, sometimes in the dark about things looking for answers and reassurance from strangers.

On one occasion one lady was corrected for something that she had said. It was about the levels of ASD. Many people jumped on this and the girl felt she had to leave the forum. I explained what  I had learnt about the levels on my year of study.  The girl hadn't said anything that was based on opinion. It was factually accurate. As someone who finds accuracy important, I tried to kindly shed light on what I thought she was trying to say.

The group turned on me. I explained that I wasn't saying I preferred levels but that that was how it was being done at the moment. They told me that I was typical of someone who was diagnosed later in life and that I should ask autistic people what they think. I found this odd as I am autistic.  I could ask myself. The comments hurt me and left the group. I guess it is ironic that a misunderstanding should impact people who have communication difficulties. I thought it was more than that though. I thought it was people not listening, not accepting others and actually being quite mean.

Now there was another divide, between those who have been diagnosed  most of their lives and those who have been in the dark for so long. I have taken on board what was said to me and I try to bear in mind. Unfortunately it silenced me. I didn't write on this blog any more.  I suddenly felt I had nothing to say.

I have now decided that I only ever spoke for me. That is the only person I can speak for. It is worthy of sharing and people can ignore it if they like. I can only speak about me. I can only speak about my autism but after all whose autism is it anyway?

To my autistic child

You are special and more unique than you'll ever know. While everyone else tries to fit in and follow, you are so focused on the things that interest you. You look at things from a different angle and see the beauty that they miss. Art and music touch you deeply. You dance, spin, twirl, clap and sing.

Your emotions are strong and because of that you feel great joy, wonder and awe. The smallest thing can hold hours of delight. You know sadness too but this will show you how others may suffer. The world has lots of suffering but it is what unites us all as human beings.

You are determined, dedicated and trustworthy. You keep your promises and don't want to let people down. You may be seen as too honest but to many this will make a refreshing change. Others will warm and open up to you in ways they wouldn't to others.

Your heart is massive. Sometimes you may need to close off from the world if the feelings become too strong but use this time to recharge and replenish. Your sensitivity will help you understand people, animals and the world better. This fuels your need for fairness. Fairness, kindness, and doing what is right is important.

You have a great sense of humour and your laugh is infectious. You remember facts and love to learn. A comment from you can be wise and insightful or make people howl with laughter. You are as people find you. Straightforward and consistent. In an ever changing world of loyalties, you remain loyal.

Others may not see you as I do. They may laugh in a mean way or not get you. They may try and exclude you or worse. That is their loss. If only they took the time to see what a wonderful person you are and what a good friend you are to have. Waste no time on such individuals.

People who doubt you, don't realise that you are a precious butterfly and if you decide to land by someone then they are truly blessed. They should be glad that someone so beautiful and interesting chose to land by them. They should be quiet and gentle until you feel comfortable and then admire what you have to offer.

I hope the world sees what I see. A funny, clever, big hearted, trustworthy and dedicated soul, and I couldn't be prouder.

Everyone seeks to be themselves truly, but few really are. You are one of them.

Yours forever grateful to know you.

Your Mother x

The school gate

A massive challenge for me is dropping my children off at the school gate. It is pretty stressful and unpleasant for most people. Trying desperately to get a little person with their own sense of time and own agenda get to school on time. Yet for someone who has autism the challenge is even greater. It is the perfect mixture of sensory bombardment, awkward interactions and no obvious social rules, coming together in a twice daily event.

To get a little person dressed and ready on time is a organisational nightmare. No matter how much time you leave you will be late. Even if you left the night before. The school bags alone will get mislaid at least three times. The matter is made worse if your child has autism. They have their own speed of moving. This speed can be described as both slow and erratic. They have no knowledge of where their school bag is either, or, in fact, the trousers they were wearing just five minutes previously.

This will inevitably result in you sprinting to the school gate in a panic. Twice a day. The only difference is remembering whether you should have the child with you or not each time.

This higher functioning nightmare of forward planning, time management, organisational and executive function skills, are employed before you even set foot outside the front door. When you get to the school gates you would think it would get easier. Well it would, if you were the only people going.

Schools are eerily quiet places from the outside. That is except for twice a day. At those times, often a 15 minute window, thousands of people decend and try and deal with their own issues around time management. If you have sensory sensitivity, then good luck with that.

People are talking to friends in person and on their phones. Babies are crying, children are shouting, parents are shouting at children for shouting at babies. It gets loud. Crowds are unpredictable, jostling and moving at different speeds. This can be blanked out by the use of headphones and dark glasses but this is a social occasion and cutting yourself off from the world isn't necessarily helpful. You are modelling to your child how to behave in social situations and encouraging them to interact with their classmates. Children say hello to my son in innocent expectation and he walks right past them. I tell him that he is being spoken to. I secretly also want to walk right past them.

The people are the worst bit. I have a tendency to smile at everyone. I can't recognise faces, so on the off chance that I know them, I smile. Some people I do see twice a day everyday so I smile at them specifically. Sometimes they smile back and sometimes they don't. It is inconsistent.

Two mums in particular in my son's class I have smiled at twice a day for over a year and they have never even acknowledged me. It is getting to the point where I actually think they are actively trying to ignore me. This is confusing. The rule in my head is that you acknowledge someone you recognise. Otherwise it is just rude to that person. It doesn't have to be a big thing. Eye contact is made and you either smile or nod your head. Simple and polite. Especially if the person has done it to you first.

By the time I have reassured my son about going to school and tried to translate whatever it is his teacher has muttered to me, I feel like a lie down, only to then have to repeat it several hours later.

I am not into small talk. I don't think someone with autism really ever is. Yet I will chat and be friendly. This has sometimes led to some parents telling me their life story as I side step away into the distance. People love having a natter and a gossip. Something I have never really understood.

After the school gates close I stand in stunned silence. The sounds echoing in my ears. The movement, the jostling and the odd looks. Still deciphering the teachers comments, the new information about someone I don't know and their diabetes medication, the invite to a party my son just received and why when I see two of the mums everyday and my son plays with their sons do they still insist in not acknowledging my existence. While at the same time hoping my son will be OK and not get picked on for being different.

As I get in the car, I notice my son's school bag.

So that is where it was.