The other side of Autism

Before working in an Autistic School I didn't really know much about Autism and all the different 'things' connected with it. All you see in the media are the 'great' sides of Autism - the boy with autism who became homecoming King, the genius with autism who can do any math sum in the World, the one who can draw absolutely anything in the World from memory.

Those things are great, they're things that should be celebrated for those individual children, but Autism isn't always sunshine and rainbows.



Autism can be hard.

When working with children with autism, you become more aware - you need to be, because all you want to do is help the children you're working with and their families, which means finding out the most you can about everything you can imagine.

Some of the things we see with our children are; non verbal, communication difficulties, no social interest at all, OCD, Prader-Willi Syndrome - never feeling full, taking food off others, no sense of danger sensory issues, anxiety, insomnia, ADHD, hearing impairment, down syndrome, dyslexia, dyspraxia, epilepsy, fragile x, hyperlexia, visual impairment, difficulty with toilet training, self harming, aggressive to others etc.

I think the most difficult thing when working with students with this level of Autism is their lack of communication, this means it can get very frustrating for them when they can't communicate their needs/wants with you. Frustration can often lead to them lashing out and self harming. One of the most important things for us to do is to try and build up a communication system with our kids that they can work with and we can understand - this really does help to minimise communication issues and frustrations as they get older.

Now Autism can usually be diagnosed alongside many other conditions, many of which I've listed below. With each additional diagnosis although it means that the individual may face more challenges, it also means that by getting the diagnosis they can get the help that they need specific to suit them to help them progress and reach their greatest potential.

Now, I said that this is the 'other side of Autism' that many of you may never see or experience. One of the reasons that you may not see them is because their families, carers and support works/staff in Schools help our students go out into the community but help support them, usually doing such a good job that others may not even notice the children's individual needs - plus as we all know, Autism is pretty much an invisible 'condition' - you can't usually look at someone - i.e in a photo or just a quick glimpse out and about - and be able to diagnose them with Autism. However, one of the other reasons is that many families/carers feel that they can't take their child out into the community anymore, they get anxious and worried about how their child is going to act as well as others around them - especially if their child currently displays challenging and aggressive behaviours. 

You may be surprised to hear the stories of how some of our children are - especially with their parents. A lot of the time we see the same behaviours in School as families see at home, however, there are few children who show very few behaviours in School, yet display a lot of challenging/aggressive behaviours at home for their families/carers.

What you may not see, is those autism parents/families/carers starting to struggle - both mentally and physically. Looking after someone with Autism is already a very large task for anyone, but to have the added aggressive behaviours, it really does start to pile on the pressure to families/carers. Let's also not forget the siblings of the children with autism - siblings often find it hard to cope with the attention that their sibling with autism gets - not because their parents/families favour them, but because they require full time attention, many of our children are 'runners' which means, they are pretty much escape artists - they can get out of anywhere in 1 second flat, which means they constantly need attention and having areas checked. 

If the child is a self harmer they are also going to need continuous support, when I say self harm, this is usually very severe - it can be head butting walls, floors, objects, hitting themselves with objects, punching themselves, pinching themselves, biting themselves and genuinely causing a lot of harm to themselves. Some of these injuries can be serious if the child is not being constantly supervised.

One thing that always makes me sad about the media, is how they tend to show glowing reports of people living with autism and how they are achieving anything and everything. This is one of the most discouraging things to happen to the family/carers of a newly diagnosed child with Autism.

When you or someone you love/care for are diagnosed with something, the first thing everyone does is go home and try to find out as much as they can about it - usually on google. There are some truly great websites out there filled with great information to help you realise where to go next, but there are also a lot of websites that can fill you with false promises and false hope, along with numerous different "cures". I must stress, that officially there is no known cure for Autism, however, this also does not mean there are no ways to help your child - there are plenty of ways for you to help your child with Autism flourish, it may just take longer than you may expect, but great things are achievable for them.

What you can do - is read blogs of teacher parents and join support groups on social media sites such as Facebook. There are a ton of support groups out there filled with parents/carers/siblings/families all going through similar experiences to what you may be going for. By having someone with you go through this journey together it really can help to take the pressure off.

To be able to help our children with Autism - of any level - progress and lead the best life that they can in communities, what we need to do is spread as much awareness as possible. People need to be aware of autism, the difficulties that the individuals diagnosed with autism face as well as their families/parents/carers. By becoming more aware of what autism is and what behaviours the individuals may display will help others to be more supportive and comforting of the parents/families/carers when out in the community - offering support. A lot of the time, when people see a 'behaviour' out in the community they may;
  • panic, not know what to do, avoid eye contact and rush past/away
  • be in shock over what they are seeing and stare
  • not understand the situation and label the child as 'naughty' or 'spoilt' - this does still happen.
However, there are odd times when someone, who is aware of the situation is able to bring comfort/help to the adult with the child and to help in any way they can. Sometimes a simple "can I help?" is all you really need to say, most of the time, the adult may decline, don't take it personal, it may just be that they don't really know at the moment how you can help - situations can get stressful quickly, but don't take this as ungrateful - the adult(s) will seriously be grateful for your offer, even if it's to move away a shopping trolley or help guide people away from the scene to give more space. Just remain calm, picture yourself in that situation and how hard it must be for the adult(s) with them, the reality is, this will most likely be their day to day life.

So please, when you read the lovely stories in the news of how the next 'Autism genius' is doing this, that and the other, congratulate them and celebrate their achievements, but also spare a thought for the parents/families/carers of those who are stuck in a rut, struggling to cope and at this moment in time not seeing a way out, there is a way out, just keep going through that tunnel until you see the light.

Nikki 

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