After Diagnosis

After we got Z’s diagnosis I felt really lost. It wasn’t that I was exactly upset by the diagnosis, he was still the boy he’s always been. I just had no idea where to turn next or what to do first.

I knew a little about autism already, but I had no real understanding of what therapies might help Z in terms of making things a little easier for him and getting him the best start in life that I could provide. I have no desire to ‘cure’ him or anything like that - he is perfect just as he is, I just want to make things as easy going and accessible as possible for him. So, as soon as I had the energy after the diagnosis appointment, I got straight onto Google and the National Autistic Society to plan my next steps.

During this time I’d been put in touch with Sarah, someone I knew a little from a few years ago in a previous job. She has so much knowledge and offered me that much advice that I literally had to go get a notepad and was writing lists down as she sent me messages. From recommending courses, to advice on schools and EHCP (education, health and care plan), local groups I could join, and autism friendly places to go, I wouldn’t have got half as much done without her advice. I didn’t even know her very well at all before, so the kindness of just offering all this help to me just fills me with gratitude.

So through Sarah’s advice and research I started to form some understanding of what I needed to do. We already saw SLT (speech and language therapy), I got the application for Z’s EHCP (which you can read about here) on the go and started to arrange visits to local schools, both mainstream and SEN schools. After much rationalising from friends I applied for DLA (disability living allowance) and a ‘Blue Badge’ (which now includes hidden disabilities) which makes a massive difference for things like parking when going to the shops because Z has no sense of danger. I’m not sure if I’m making it sound easier than it was, I’m just simplifying this to keep it brief - it was all done over weeks and months. There was a lot of time where I just sat and stared at the walls because it’s absolutely overwhelming. There is a lot of form filling and going over and over the things Z couldn’t do, it’s hard to keep looking at all the down sides. I always kept notes of the progress of each application so that I could remember to chase up on them all.

I couldn’t get on the recommended Early Birds course that was put on by the National Autistic Society - it was no longer running in our area and they couldn’t suggest an alternative. So I contacted our paediatrician for some advice. Everything she suggested I was pretty much trying but she did mention I could try to contact CAMHS to see if I could get onto their post diagnosis course. I didn’t hold out much hope with us being discharged from CAMHS (there's more about this in our Diagnosis Story), but I just took a chance and called them, and they were so helpful! Myself and Daddy Z got a place on the course a few weeks later and it was really helpful and insightful. They helped us understand more of the struggles that Z was facing with his sensory issues and showed us just how varying the spectrum can really be. We understood we were overwhelming Z with too many questions and not giving him the time to process and reply. We learned the importance of allowing time for special interests and providing a wide ‘sensory diet’.

It’s tempting to keep everything to yourself and just muddle through this stage, but I’ve found it’s so much better to just keep asking for help. It’s hard to pick up the phone or even just get through to some health professionals, but the persistence was worth it for us. I’ve heard so many people saying what a fight it is to get support and it absolutely is, it is not easy, but seeing the improvements Z is making just makes it all worth it. It can be slow progress, but it is progress and we treasure all the little things even more now.

Sarah x