They just don’t know

We can’t blame people who don’t know…

Those who have no experience of autism, who don’t have it themselves, don’t work with autistic individuals, don’t have a family member who is autistic are ignorant of the difficulties faced by those on the spectrum. This isn’t there fault, there are many things I am ignorant of I will freely admit that but it’s simply a case of never coming into contact with the subject or never having a need to find out more about it that is the cause. We seem to be expecting the world to go and find out about autism and educate themselves, something they are simply not going to do for themselves without a reason. Therefore, it is our job as autistic people, there parents and carers and people who work with autistic individuals to make sure that information about autism is everywhere if we want people to understand WE need to make that happen. We need to make sure that it is unavoidable for people find out about autism. This way we will reduce ignorance and increase understanding and empathy among the general population. Use social media, talk to people, don’t be afraid to say my child is autistic, I AM AUTISTIC! Tell people what it means, how it affects you or your child or someone you know. It is certainly nothing to be ashamed of and in order for autistic people to live happy healthy long lives changes need to happen and these will only come about if everyone who cares enough makes a noise about it. Lets make autism just another kind of ‘normal’. I know it sounds over ambitious but we need to create a society where everyone feels like they fit in and belong, where there are places that feel comfortable for those who are over whelmed easily, where no one stares at those who flap due to excitement, where there are schools that can actually cater for the varying needs of the autistic child etc etc etc. It seems wrong that we need to fight for this to happen but the truth is that we do. If we want anything to happen, we are going to have to fight and struggle to get there. But if we come together and show we aren’t afraid or ashamed to make that happen it might just… I know it wont be easy but it would be amazing don’t you think?

Happy New Year!

New Year’s Resolutions…

My first attempt at a blog post for 2019! Happy new year everyone, I hope you and your families have all had an enjoyable festive period.

In the past new year has always been a time where I put demands on myself to sort out various aspects of my life such as eating healthier, trying a ne hobby (as I realise I don’t have any), promising to stay in touch with friends more often etc. I then, like many people, get to the end of that year and realise that after about January the 10th I already stopped putting the effort into doing these things. Except for last year I promised myself that I would try and get the kids out and about as much as we could and do more things together, this I think we succeeded at. We went away 5 times during the year and had various outings in between. Most of which I managed on my own with all 4 kids, challenging at times but honestly the best times of the year by far.

This year I have decided not to put pressure on myself to meet specific targets. I want to ensure that we have things to look forward to as a family and that I have things to look forward to myself. I have realised that as long we are working in the right of our goals then it doesn’t matter how fast or slow we make progress towards them. Small steps or slow progress is much better than expecting too much and then feeling like you have failed at something. I am the kind of person who, when I decide I want something, I want it now. Even if it’s something like a skill that takes a long time to master, I get frustrated with myself that I am not as good as I want to be at it faster.

So, I suppose by saying I’m not going to make a new year’s resolution this year and give myself a break I AM actually making one. Oops!

The Trouble With School

The Trouble With School

School is the one place outside of the family home(s) we would expect our child to be cared for and listened to the same standard that we would give them. Of course, we want our children to achieve the best they can at school but above all else we want them to be happy and enjoy their time there. As we know this is not always the case, not all children enjoy school and not all children achieve their potential because of this. As parents we may then feel guilty for sending our child to a place, an environment they are not happy in, I know I have had those feelings. Why am I being forcing to put my child through this every day?

As we all probably know already the reasons a lot of our autistic children are struggling at school are around a lack of understanding. Understanding of teachers, support staff, lunchtime supervisors, senior leadership and other children. Though some school staff have autism training there far more that do not. Even the staff that have some level of training it is likely to be out of date or very minimal in content. This needs to improve drastically! Also, my personal opinion is that it should be delivered by autistic people themselves or their parents or at least be planned and resourced by them. I believe it is impossible for a group of people who have no personal experience of autism to truly understand it enough to train other people about it. Training should be absolutely compulsory for all school staff with at least one specialist in each school (depending on the number of children in their school with/ or suspected to have an ASC). I don’t know if you agree? But that’s my personal view on it.

My son was regularly told to stop twiddling with hair and put it in the bin until he Dr. said in a letter to school that he needed to fiddle with something to help aid his concentration. My older son was excluded from primary school three times for lashing out at staff but this only happened when he was at crisis point/having a meltdown and staff tried to approach him. He even left school one day in the morning just after arriving in the classroom. The poor teacher couldn’t leave the rest of the class so by the time he’d called in a teaching assistant to take over he’d no idea where he’d gone. No one stopped or questioned where he was going or why he wasn’t in class. They continued to search the school knowing that the gates were still open for parents to leave. My husband and I were going into town and our son jumped onto the bus behind us looking quite upset! We were very lucky he had seen us heading to the bus stop or there wouldn’t have been anyone in at home when he got there. The school didn’t call me, I called them about 45 minutes after he had left the school. The headteacher blamed my son for leaving the school as he should no better at his age and wasn’t going to take any responsibility at all. These are all examples where there is a complete lack of understanding.

It’s not only a lack of understanding around behaviours but also around the ways which autistic children learn. When I was at school I was labeled at shy and lacking in confidence and the answer was to force me into situations I was uncomfortable to increase that confidence through exposure. Like making someone who is afraid of spiders hold a tarantula. The truth is (with hindsight) that is wasn’t a lack of confidence but it was a lack of social skills, I did not know how to ‘be’ around people or what I should say to them. Those skills that people are supposed to pick up naturally many autistic people just – don’t. Forcing an autistic child who struggles with social anxieties or a lack of these skills that most naturally acquire into a situation such as a group discussion or giving a presentation, things we all had to endure at school, ISN’T GOING TO WORK! But schools continue to do it to ‘increase their confidence’. In fact, all it does is make the autistic child feel inadequate as they feel they are incapable of doing things that the other kids can. It high lights to them that there is a weakness there and doesn’t boost their confidence at all. Another huge lack of understanding.

I believe forcing an autistic child into doing anything that makes them feel uncomfortable is a very bad idea. It will have detrimental effects on their mental health. But schools continue to do it.

My older son, now at secondary school in an IR, is very bright and academically able but his report shows his levels are way behind what they should be based on his Y6 SATs results. This is mainly because he doesn’t always attend lessons. The reasons he doesn’t attend are quite often because the teacher shouts a lot or speaks too loudly, there is a lot of disruptive children in the class, he’s asked to work with people he doesn’t know, he doesn’t understand the learning and feel uncomfortable asking for help…. Many things, but all of which are things that could be changed. I have been on the verge of removing him from school and home schooling him lately. We talked about it a little and we agreed to see how things are at the end of Y8 and if he’s making more progress. I feared this would happen, he’s losing his academic ability because of being in an environment that doesn’t fit well with his needs as an autistic person. But what is the alternative? He’s too able to attend a special school and there’s nothing else. There should be a place in school for every child tat suits their needs and where they can show off what they are good at instead of them all being placed in the same box and all expected to come out the same.

I’d love to hear your thoughts.