A-Z Of Autism - F Is For....


So if you read E is for then you will know what all of this is about, if not here is a little recap. I'm a Mum of 3 autistic children and way back 13 years ago when my eldest was diagnosed I really struggled to find real-life info about autism. So here we have the A to Z of autism, I'm not a Doctor or health care professionals, these are just some words on what autism means for us. Each fortnight (life stress dependant!!) is the next letter of the alphabet, do head over and check out E (highlighted above) and let's get on with F!


It feels like there is ALWAYS something that we have to fight for, from day one really. First, it was a fight to get a diagnosis, then a fight for support, then a fight for an EHCP. You think your fights over when you get that, but believe me, it's not. My eldest is in college and I'm still fighting for what is right for him because apparently support ends when you turn 17!! Don't even get me started on the fight for the correct rate of DLA or PIP, it took me 8 years to get high rate mobility for Pops because she can physically walk they always said no! You always have to get your fighting gloves on and it's very unfair, the whole support system in my area is very unfair in actual fact. It is very much a postcode lottery when it comes to support and rights! 


For my 3 familiarity and routine is key, our house is run by military precision, we get up at the same time, go to bed at the same time, eat at the same time every day. Our routine is even the same on holidays, it keeps everyone happy and settled. Even when it comes to holidays we go to the same place at the same time of the year. 


There used to be categorisation of the autism spectrum, so your child would be categorized as high functioning or low functioning on the spectrum. I'm not sure if it's the same in all areas but now they just diagnose as your child have ASC (autism spectrum condition) or ASD (autism spectrum disorder) From speaking to local friends several disagree with this change as it makes getting extra support more difficult. For me I see this for myself Pops requires more support than Dj, yet they have the same "paper diagnosis" so "on paper" that makes them the same, but their needs couldn't be more different even when it comes to schooling, one goes to a specialist and one to a mainstream. Gettig support is hard enough and I do believe when the children were categorised in a functioning way it was easier to get the correct support. I suppose this links to fighting above in a way!!


There is a massive feeling when your child gets diagnosed of feeling like a failure, this very common feeling comes up when you speak to other parents of children on the spectrum. The first thing you do is question if you did anything wrong if you could have done anything differently and I can tell you 100% the answer is NO! Autism is a neurological and developmental disorder, although not proven yet I fully believe and support the idea that you are born autistic. Having children on and off the spectrum supports my theory, also hindsight, looking back at my 3 asd children as babies it was obvious now they were on the spectrum.


This one massively links into fight also as funding is a common thing to have to fight for (again my opinion of my local area/authority) Even when it comes to choosing the school you want your ASD child to go to it comes down to available funding. Even in mainstream, it's all about funding, especially if they have an EHCP as the school then gets extra funding for the child to provide the necessary support. I have struggled to get adaption funding from my local council and all 3 times we've needed adaptions I have had to appeal as the funding was denied at the panel. I am getting ready for my 4th fight for funding currently, so I will let you know how that goes!!


Understanding their feelings seems to be a struggle for my 3 and controlling them is an ongoing battle. We have seen CAHMS for all 3 and they have all seen a counsellor, psychiatrists and psychologists for various medication, treatments and therapies. 


These can be tricky for some kiddos on the spectrum, in my experience, my kiddos struggle to maintain friendships as they just don't seem to understand how a friendship works, they struggle to see other peoples opinions, understand their friend's feelings or even just their point of view. Friendship is also massively important for YOU, having someone ear to bend when you're having a shite time is important cause it's hard being a SEND parent and it's ok to moan about it being hard, so find your tribe and that friend and have that moan!

So that's my Fs for this time, I am hoping to have the next letter up in 2 weeks! But in this house, you just never know, but stick with me OK. If you want to catch up on previous weeks check out the A-Z of Autism page which contains links to all previous letters.

Thanks For Reading



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