We had Eva’s Autism Diagnosis a few weeks ago. I know we are all relieved to finally have the diagnosis confirmed so we can move forward with providing the right support for Eva, especially with moving up to secondary school in September.
For quite a few years we have suspected Eva is somewhere on the autistic spectrum. We tried to bring this up with several teachers and professionals in the past who just labelled her sensitive and forgetful. Knowing so many families fight such a long time for a diagnosis with support from teachers etc we decided to wait it out and hope someone would notice. Its hard with autism as it presents in so many different ways and girls especially are known to mask it by learning and copying their peers.
Thankfully that happened in year 4, two years ago. Eva’s teacher at the time suspected she is autistic and masks well, she passed us on to SENCO and suggested I took the NAS course to learn about autism in females. I am so glad I did take that course as it taught me about masking which made me realise that’s exactly what Eva does. She seems sensitive but outgoing and chatty, she masks well in public. Come home time though and the meltdowns occur, all the stress from the day just comes pouring out. In reality while she appears chatty and outgoing she struggles to maintain friendships, having only made her first real friend this year.
SENCO at Eva’s school have been fantastic, I really can’t fault them. The lovely woman who I spoke to chatted for a good hour with me discussing Eva’s behaviours and struggles both in school and at home. Having a daughter similar to Eva who was also late to be diagnosed, it was lovely to chat to her and I left feeling like someone had finally truly listened and agreed with everything we were saying.
I expected this to be an extremely lengthy process, we warned Eva of this to prepare her and were surprised when in just a matter of weeks we had our first assessment appointment at the local community hospital. There we went over Eva’s history, behaviours and struggles again and they agreed a 3di assessment (computer assessment) was the best way to diagnose Eva.
This was all booked for last April, but of course covid19 put a halt to this. The phone lines wouldn’t connect and nobody within the same building could get me through to that department so I decided to wait it out and chase it when things eased. I expected this to be a drawn out process and was amazed at the speed of our referral so far so I felt hopeful things would be back on track soon and thankfully last month we received a letter for a phone call appointment.
Eva’s Autism Diagnosis
The phone call went surprisingly smoothly considering how worked up I got over it. I don’t do well with phone calls, my brain fog makes me panic I’ll forget stuff or mix up my words but thankfully the guy I spoke to was really nice and we quickly got through the 3di assessment with him reading the questions and telling me the options. All the questions were either yes/no, somewhat/mostly/all the time etc to each part which made things a lot easier.
In just under half an hour we completed the assessment and I was shocked to discover we would find out there and then. The results quickly came back showing Eva is on the autistic spectrum. The guy told me this and followed it up with ‘but you knew this anyway didn’t you?’. Parents do just know I think, it can be hard to get a diagnosis but if you know deep down you can still provide the support they desperately need.
Helping Eva Cope With Sensory Issues
We already have a fairly good routine that suits Eva well, changes to it do throw her but we do our best to warn her well ahead of time. She’s been using ear defenders since year 4 as and when she feels too overwhelmed. Socks and clothing have always been an issue, I’ve lost count of how many mornings we’ve both ended up in tears just trying to find socks she will wear without getting upset.
We’ve bought a few different sensory toys for her over the years and she has a few favourites she always goes back to. Eva struggles with food, tastes and textures can really distress her. Sometimes she will eat the same thing on repeat, she eats food from her plate one food group at a time, never mixing them. Some of the things we’ve done or do to help do make things a little easier but we rarely go more than a day or two without a small wobble over something.
I’m still in shock with how quickly we received Eva’s autism diagnosis to be honest. If you take away this pandemic year, it has taken less than a year, two years including a pandemic really isn’t too bad. I’ve been umming and ahhing over wether to add this in as I know so many parents struggle and fight for years for a diagnosis and I don’t want them to feel I’m showing off but equally I hope this does give hope to other families trying to get a diagnosis for someone they suspect may be on the spectrum.
It doesn’t always take forever, sometimes it really can be straight forward. I am so grateful, we have been so lucky that Eva is in a school with a brilliant SENCO team who are so friendly and happy to help. Without their support these last two years would have been so much harder.
Moving forward we have now made both Eva’s current school and her secondary school aware of her diagnosis and both schools are working on a hand over for all SEN children moving up which again gives me some confidence that Eva will have the support she will need through secondary school.
Eva’s diagnosis hasn’t really changed much for us as a family but it should hopefully make it easier for her at school and work. I’m hoping once we are able to talk to her secondary school we will be able to organise an EHCP for Eva to help make school life easier for her, she has made a fantastic friend who will be moving up with her too so I’m a little less anxious about how Eva will cope moving up.
Recently, I have been diagnosed with ASD (Autism Spectrum Disorder) which means at times I can get overwhelmed and struggle with certain things in every day life. This has made it difficult because in the past teachers may have thought that I am being emotional and struggling just for attention when I do not mean to do this as I enjoy being at school and it should be a enjoyable yet educational building.
Through my childhood leading up to now, both mum and dad have made things quite straight-forward for me. When there was clothing problems about certain materials and seams bothering me, I could tell my mum and when it was convenient her or my dad would go to a shop with or without me and choose a pair of socks. This would help immensely.
From Year 4, I have been using ear defenders but now I have started to cut down on using them so I can cope when I do not have them around so that I don’t get overwhelmed too easily. This year, after I got my diagnosis, I have started to grow a collection of sensory toys. Even before I was diagnosed I have had a lot of sensory toys. These help me by calming me down and helps me to cope by distracting me from what is around me. Sometimes this can get people annoyed with me as I zone out when using these sensory toys, but now I can tell them I’m autistic and these help me to cope.
Overall I think having an autism diagnosis has had positive and negative points in different ways. For example: A positive point may be that people may understand ways that calm me down to stop me from getting overwhelmed a lot. And a negative point may be that that if people do not know I am autistic they may misjudge me and think I am doing it for attention when I am not.
Izzy wanted to join in with this post, she said that although she is the younger sister she feels very protective over Eva. Izzy accepts Eva as she is and says that even though she may be different to others in some ways, she loves her no matter what and being diagnosed as autistic makes no difference because Eva is who she is.
Awareness and Acceptance
We have written this post in the hopes it helps raise awareness of autism, the difficulties with spotting autism, especially in females, the process of a diagnosis and individual feelings for those who may be looking for something relatable. I know a big part of me starting this blog was needing an outlet and a good way to discover things like this myself. In fact it is thanks to a lot of the bloggers I still follow being so open about their own journeys with autism that helped me realise Eva really was likely to be on the spectrum somewhere and without that I doubt I would have felt confident enough to chase a diagnosis for her.
We also want to remind our readers that it isn’t just about awareness, acceptance is just as important and I feel Izzy’s input helps to show that. Autistic children simply need acceptance and understanding. Especially as parents we won’t always get it right, it can take a huge amount of trial and error to make life easier for our children but surrounding them with love, kindness and acceptance goes a long way to helping them have a happy life.