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Autism, To go private or not

Thursday, 30 May 2019  |  Admin

Things Will Not Always Be This Hard I want to confess something. I had forgotten how completely and utterly overwhelming the early days are. I had forgotten about days filled with Meltdowns that feel like they will never end. I had forgotten how hopeless I felt the first time around. And the reason I had forgotten, is that things do get easier. So much easier.

At eleven, it is now rare that the Bear has a full blown Meltdown. She is articulate, she is rational and she is proud of who she is. If she is finding something hard, she can usually tell us and together we put steps in place that will help her cope. I know her triggers, and I know how our life as a family needs to look in order to reduce those as much as we can. And those accommodations are so much a part of our life that it is rare we give them a second thought. There are times of course - as with any of us - when things don’t go to plan. But on the whole life is good. With the Lion we are in a different place. There are still days - many of them - when my eyes fill with tears and I rant at the gods for making his life so hard. His triggers aren’t yet always predictable, his Meltdowns harder to stop in their tracks, his emotions so big that they overwhelm him often, he doesn’t yet have the vocabulary to talk about how he feels, or the understanding to explain what he is thinking.

Life is hard. For us as people who love him. But more importantly for him. There are days I feel so lost, that honestly I don’t know what to do. Days when I look at the strategies we have in place and wonder if any of them are helping him at all. But then I look at the Bear. And I remember in the early days, I felt much the same. Because the truth is things don’t get easier overnight. And often they get even harder before they start to get easier. But they do get easier. Over time skills are learnt, both by us and our children, that build understanding. We learn triggers. We learn to adapt. We become a team. A team who understands inside out what it takes to make life work, to make life good. Because good is possible. Good will happen. I remind myself of that when things are hard. And you should too. Because one day, your little one will find things easier, and so will you. To Go Private Or To Wait Having been referred further down the pathway and been told that the Lion will now wait 18 months for his Autism Assessment we now have the decision to make about whether to wait or whether to pursue a private autism assessment. The reality is there are pros and cons of both.

A private assessment is costly, and sometimes not seen as being as valid by either the Local Education Authority or the Health Authority. And as eligibility for an EHCP technically depends on need rather than diagnosis, the lack of a diagnosis shouldn’t prevent access to any support available. The reality is though, that a diagnosis often affects both the strategies used in supporting a child and the strategies used at home. And from my point of view will mean that as a mum I am doing the very best job I can in supporting him to be the best that he can be. There is a certain amount of guilt I feel, when it comes to the choice of trying to decide whether to go down the private route - simply because it is a choice that I know many families just don’t have. Families like ours shouldn’t need to be put in the position we are.

The process according to NICE guidelines should be started within eight weeks... As we all know that isn’t what the picture looks like down here on the ground. But we are lucky, lucky because we have that choice, and lucky because between us we have the skills and understanding needed to advocate effectively for our children. I know that as much as a big part of me feels like we should sit in line and wait our turn. It isn’t something that right now I feel we can do. The need to be proactive, to understand, to implement strategies that will give him the best chance of being the best version of him he can be is too strong. He deserves me to do all I can. To do less would be to fail him. And right now, this is the only things I know how to do, to make a difference. I don’t care about the label, or the diagnosis for its own sake. The Lion will still be my Lion. The boy I love with my entire heart. But I do care that that label will signpost me, that it will help me do the right thing as a parent, that knowing will mean I can find tools to reduce his anxiety, that ultimately it will give me the best possible chance to be the parent he needs me to be. When I look at it that way, there isn’t really any choice to make, Is there?