World Autism Awareness Day - 2nd April 2020
Thursday 2nd April 2020
Today is World Autism Awareness Day or WAAD for short. As the very proud father to Jacob and a campaigner for Equality and Inclusion, I am excited to share some of my thoughts and experiences of Autism.
We knew Jacob was unique from a very young age, my sister had a child around the same age as Jacob and although I know you shouldn’t do this, it was just too easy to compare milestones and recognise that Jacob was behind. At eighteen months, Jacob wasn’t speaking or communicating in any way, instead he would get upset and bang his head on the floor (this can be scary when you have wooden floors). We started, what I’m sure any parent of a child with additional needs would confirm, is the very painful and slow process of getting support for your child, or as I like to call it, ‘getting someone to take you seriously’.
It sounds funny but it’s genuinely no joke. As a parent this is a really difficult and stressful time. You know something isn’t quite ‘right’ with your child, you start reading and researching and everything that you come across tells you ’parents know their child better than anyone’, ‘early intervention is key’ or ‘with the right support your child can be healthy and happy’ the problem however is that, when you try and get the early intervention and support, you are met with disbelief, delay and that patronising look that says, “You are just a pushy parent and you really should relax and let you child progress at their own pace”.
Well unfortunately (or fortunately depending on how you see things), I am a pushy parent, not with Jacob, but with those that stand in his way. I began a one-man mission to get Jacob the early intervention he needed. This meant getting the attention that was required of both the education and health professionals needed for him to be given a diagnosis. A diagnosis is needed to get an Educational Support Plan. Sadly, I know lots parents who are still waiting for their child’s diagnosis and therefore don’t yet have a formal Educational Support Plan in place when their children are in Junior School.
Jacob’s first intervention was speech and language therapy and wow, what a difference this made to both Jacob and me. Over a period of 12 months it transformed our ability to communicate with each other, he was learning how to talk, and I was learning how to help him (He’s 7 now and doesn’t stop talking - careful what you wish for Dad).
My advice to any parent starting this journey is to read, research and push, don’t take no for answer, it’s your child and you really do know them better than anyone.
Eventually Jacob was diagnosed with Autism and in particular, Pathological Demand Avoidance or PDA for short. I was expecting the Autism diagnosis, but I had never heard of PDA. To my amazement I found that some Local Authorities in the UK don’t recognise PDA as a condition, but the more I learnt about PDA on the PDA Society website the more I recognised almost every trait in Jacob.
In essence having PDA means, like the rest of society Jacob doesn’t like being told what to, but unlike the rest of society this manifests itself in a pathological way and impacts his ability to do or take part in any tasks (even ones he likes) without suffering from extreme anxiety and stress. Some examples/ traits of PDA can be:
Extreme anxiety from a need to be in control
Appearing social but with a lack of understanding
Obsessive behaviour that is often focussed on people/things
Using deflection tactics such as saying “Dad, I’m so tired” or “sorry Dad but my back is broken today”
This means the support he receives in school would be even more important for his development and it meant as his parent even the simplest demands such as cleaning teeth, or eating dinner required me to adapt my approach. Thanks to the amazing team in Jacob’s school setting and the fab folks over at the PDA Society (links below), Jacob is now well on his way to finding his place in the world and I have the knowledge and the techniques to support him.
The right school setting and educational support is vital for children with Autism. Jacob and I are very lucky that we live in Wales and the Welsh Government has done a tremendous amount of work in recent years to improve its approach to special educational needs through the introduction of The Additional Learning Needs Act (ALN), which is being implemented across wales in 2020.
Choosing a school setting that was going to work for Jacob was a difficult task and I visited lots of schools to see what provisions they had in place that could meet his needs. This is when I learned about The Resource Base approach and it blew me away. Jacob now attends a mainstream primary school which has a Resource Base unit as part of the school. When he started in reception class, he spent 100% of his time in the Resource Base, being supported by a fabulous team of trained professionals helping him make the adjustment from nursery to school at a pace that suited him. The idea of the base being, that they will slowly integrate Jacob (with support) into the mainstream setting of the school but again at a pace that suits him and with the knowledge that if his anxiety becomes too much on any given day he has a safe space back in the base where the pressure is different. He is now in year two and already spending more than 50% of his time in the mainstream class of his year group. Jacob loves going to school, and I have a great relationship with the school and the teaching staff who I genuinely believe are invested in understanding and caring for Jacob. Some parents and children across the UK are not so lucky, last year the National Autistic Society published the Timpson Review of School Exclusions which showed that the number of autistic children being excluded from school had almost doubled in the past seven years.
Even during recent weeks with the Coronavirus meaning most schools have closed and parents like myself are having to attempt our hand at continuing education at home, the school have been fabulous sending work packs and calling us once a week to check in on how we are getting on.
On the advice of the teacher, I am trying not to feel the pressure of filling the education gap by doing too much school work and instead we are making the most of this unexpected time together to learn more about each other than about maths and literature. Every day this week we have used our daily exercise to embark on Jacob’s favourite pastime of role play, he loves to imagine himself starring in his favourite TV shows and takes his character very seriously. I have loved every second of watching him pretending to be Danger Mouse and I have to say I make a pretty awesome Penfold, even if I do say so myself.
Somebody asked me recently, if I had a magic wand would I take away Jacob’s Autism and PDA to make his life easier in the world? and I have to admit it made me think. If somebody had given me that wand at the beginning of his journey I would almost definitely have said yes, but today, as I look at my beautiful, funny, and charming boy, I wouldn’t change a thing about him. Instead I would just want to change the world around him.
On World Autism Awareness Day, I’m asking you to wave the wand, help Jacob, me and all the other parents and children, to shout about and raise awareness of Autism and PDA in the hope that doing so, allows us to change the world around all our children.
- Craig Richards, Managing Director at EA Inclusion – Part of the Equal Approach family!